Anyone have post partum thyroiditis?

[charlie15]

I know I have come across a couple of peeps in the breast feeding section who have but not many. I have been diagnosed with PPT in the hypo stage when LO was 6 months old and have had it pretty badly with really severe fatigue that is like a brick wall descending on you! Weight loss then a huge amount if weight gain, depression, dry skin, brittle hair, large goitre with a rash all over my neck etc. Oh wow I sound lovey! Have had to make some lifestyle changes and pretty much slow down a lot and pace myself which i find really tough as use to be into sport so was always very active. I have been on thyroxine for 2 weeks now and still waiting for it to really kick in, soon, I hope! Anyway I was just wondering if there was anyone else out there going through this or who has been before? feeling pretty alone with it at the mo so feeling sorry for myself!

 

[Guppy051708]

mama PPT is horrible. I'm so sorry u are experiencing this too. Personally I've had it every time I've given birth. It is absolutely horrid. I'm basically just expecting it this time around too. With DS1 I was 10lbs under prepregnancy weight around the two month mark. My moods were horrible. I was really mean and raged a lot (which is unlike me) when it got to its peak around five months PP I would get jittery and restless. Don't know what it feels like to withdraw from meth but I'm pretty sure it was similar. Once we started investigating the issue was about then and when I was getting bloods that's when we realized I had PPT. Around 5 months I got my levels checked and they were 0.001 so extremely hyper. I got them tested a week later and they had changed drastically to almost 12 so it went extremely hypo. No lie, I gained 35lbs in a matter of ten days I had no control over it whatsoever I had all the symptoms I've mentioned. My bones hurt, my hair was falling out at beyond normal rates for beig postpartum. My skin was dry. Sometimes I felt sad. The weird thig is that DH and I can actually pinpoint, nearly down to the day, the day that it went from hyper to hypo. My mood swings and rages stopped suddenly. I suddenly stopped feeling jittery and shaky too. So odd but its true.

The second time I had PPT was not as severe as the first but its still really tough. The hyper stage started around 3 months PP but it wasn't nearly as severe as after DS1. I was a little moody and got jittery but not all that much. It was much more bearable. Then around 8 months PP it went hypo. And had the usual hypo symptoms. This time especially had sore bones and joints as well as hot flashes and then being cold. I was unable to lose weight and then over the course of a month I gained like 12lbs despite being on a healthy diet.

I'm dreading being PP w this baby I know I'm going to have it again. I just hope its less severe. It's such a horrible thing to go trough it really effects so many facets of ur life, even my marriage bc of the moods and stuff. I was overweight to begin w and so its been detrimental to my health as well. The reason why I was overweight despite regular exercise and eating right was bc of my thyroid. I've been hypothyroid since before I was 10 yrs old. I've been in meds for it but with PPT its such a fine dance w trying to figure out the meds.
But once it went hypo and I strayed getting treated I notice a difference within about 10 days. The symptoms were still there but they wernt as bad. It declined slowly after. My endocrinologist says it can take up to 6-8 weeks to see the full effect of the meds.

Hope it leaves ya soon hon I know how hard it is. I also know that few ppl understand what it's like. It's honestly so bad for me and so detrimental to my health that its one reason why DH is getting a vasectomy this month (amongst other reasons but this is def one of them)

 

[charlie15]

Guppy, thanks for your very detailed reply, I was really starting to think no one else has had this as no one I know has ever heard of it! Crazy as when you read all about it it's meant to affect 10% of women post partum

Wow so you have been through this twice and likely again, you poor thing not surprised this is your last one then, I wouldn't wish this on anyone! It sounds like your hyper phase was a lot worse than mine. I didn't really notice anything, except now looking back I did loose a lot of weight fast, I also had lots of painful joints, but I put that down to breast feeding hormones,I have since read that joint pain can be caused by hyperthyroid! My hypo phase was just awful, but mainly because I didn't go to the docs as was putting all my symptoms down to normal new mum stuff, but at one point I did think that had post natal depression. Eventually I was so bad that I finally realised I was sick so went to the doc. I had a TSH of 97 and no thyroxine was detected

Anyway I have now been on thyroxine 100 mcg for 3 and a half weeks and am already feeling so much better! This week I have more energy, my goitre is getting smaller, the weight is coming off and I just feel more normal. I don't know about you, but I don't think I realised how unwell I was until I started feeling better. But I'm a lot happier and more optimistic about things now the drugs are working just waiting to get a hospital appointment which should be in about 4 weeks and will get bloods done again in 3 weeks.

Can I ask you if you TTC while you were on thyroxine? Originally the plan was to TTC when DD was 9 months, but that will be in 2 months time. I am happy to wait longer as just really want to get my body back to normal first. I haven't had AF yet but I am still BFing so could be that or my thyroid she only feeds during the day and has done since she was 5 months, so I was hoping to get AF back over the next 2 months. Did it affect your cycle at all?

 

[Livsmom]

Hello. I do not think I have what you are describing, but I think I have the hypo thyroid thing going on. My DD is 5 months old. I am 41 in July. Since having her I have no energy (major understatement, I feel like I am 100), I have gained a TON of weight yet I am not eating any different, I feel like my bones ache, my joints are killing me, my back, hips, knees, legs, feet hurt so bad I cry. I have been referred to a rheumatoid dr who said go get x-rays and come back in October. My blood work all came back normal so my regular dr won't give me a referral even though I have suspected thyroid for a while. My hair was falling out in huge amounts. I have been depressed. This weekend I started feeling so mean and mad at nothing. I also now have the beginning of restless leg syndrome I think, which I read is linked to thyroid. Does this sound like it could be to you ladies? I am desperate for advice! I am going to call my dr tomorrow and demand a referral. I have insurance and am paying for the visit, so I do not know how she can deny me to right to go see a dr.

 

[Guppy051708]

Hello. I do not think I have what you are describing, but I think I have the hypo thyroid thing going on. My DD is 5 months old. I am 41 in July. Since having her I have no energy (major understatement, I feel like I am 100), I have gained a TON of weight yet I am not eating any different, I feel like my bones ache, my joints are killing me, my back, hips, knees, legs, feet hurt so bad I cry. I have been referred to a rheumatoid dr who said go get x-rays and come back in October. My blood work all came back normal so my regular dr won't give me a referral even though I have suspected thyroid for a while. My hair was falling out in huge amounts. I have been depressed. This weekend I started feeling so mean and mad at nothing. I also now have the beginning of restless leg syndrome I think, which I read is linked to thyroid. Does this sound like it could be to you ladies? I am desperate for advice! I am going to call my dr tomorrow and demand a referral. I have insurance and am paying for the visit, so I do not know how she can deny me to right to go see a dr.

The symptoms are def suspect IMO. There is a spat in the medical community about what a normal thyroid level should be. The old doctors say its not hypothyroid until TSH is over a 5.0. However, the up to date research shows it should not be over 3.5 (some even say 3.0). So what I would do is ask for the specific number. Never rely on 'your result is normal) bc doing so could result in an untreated thyroid depending upon ur caregivers school of thought. I firmly agree w my endocrinologist that thyroid should be around the 3.0 mark. I get bad symptoms at 3.5 personally. I know many in my ppl are absolutely horrid symptoms at a four, so I'm inclind to believe the new current information unfortunately many doctors are behind in this. So def ask hat the actual number is. Bc if it is over 3.5 I would be getting a second opinion for sure. U may also check w ur insurance about referrals. Mine does not require a referral, so I don't have to wait for the doctor to agree about thyroid. Your insurance may or may not require a referral and if they don't I would def be looking into it.

Also TSH is commonly the only thyroid panel run, but it doesn't tell the whole story if ur doctor hasn't yet, I would demand another slew of blood work including Another TSH, T3, T4, Free-T3s, and Free-T4s. I would also request an uptake to see if u have the thyroid antibody that often causes PPT* (*note: having this antibody is not a requirement for a diagnoses, its just something commonly seen parrallel w PPT. I personally tested negative for the antibody every time).

One thing that commonly can help red flag hypothyroid is measuring your BBT (like how u would for charting for TTC). Many times BBT will be lower than it should (95F-97.0F). Now this is certainly not a diagnostic tool nor is it conclusive bc some women's BBT is not effected and this it would marker anything. But it's a good thing to check out over the course of the month and would give u some beef to ur argument if ur temps were lowered*(note: most doctors know nothing about the BBT and thyroid connection, so expectations would be low but if nothing else it *could* give u some more insight).

As a final note there are variations of PPT. The classic is when it goes hyper (usually around the 2 month PP mark, give or take) and then around 5 months PP (give or take) it goes hypo. Now that is the classic version of this disease but it presents in other ways too. Some women only see one phase of it. So for some they may only go Hyperthyroid. (Not as common). For others they ONLY go hypothyroid. This almost always occurs sometime within the first year if being PP and commonly occur around 2 months PP for those that only see the hyper stage and around 5 months PP for those that only experience the hypothyroid stage. Keep in mind though that these can occur at any time, those are merly averages.

 

[Guppy051708]

Charlie, it took me 1 month to get my w the baby we MCed. Then one month w DS1. But DS2 took 7 cycles (longer than seven months bc my cycles run about 32-34 days. DD took around 9 months but I was breastfeeding and I don't get cycles whilst BFing. I also ovulate really late (CD22-24). And my luteal phases are only 10 days. It's important to note that I do have estrogen dominance and a progesterone deficiency. I also have endometriosis so I'm not sure if thyroid is to blame for this or not. I do know that thyroid issues can cause a lot of problems TTC but I also know many ppl with thyroid issues that have no problem TTC. I guess really all u can do is see what works and what doesn't. If u are on thyroid meds and ur levels stabilize at a good number then TTC should not be effected whatsoever bc even tho u have to take a pill, technically ur body is functioning good bc if that.

As far taking meds while beig pregnant, its totally fine and safe bc its just a hormone that ur body should be producing. I've been on it for most of my pregnancys

One thig I did note while TTC and charting BBT, my temps were classically lower than normal when my thyroid was hypo (and not getting treated).

 

[Livsmom]

Hello. I do not think I have what you are describing, but I think I have the hypo thyroid thing going on. My DD is 5 months old. I am 41 in July. Since having her I have no energy (major understatement, I feel like I am 100), I have gained a TON of weight yet I am not eating any different, I feel like my bones ache, my joints are killing me, my back, hips, knees, legs, feet hurt so bad I cry. I have been referred to a rheumatoid dr who said go get x-rays and come back in October. My blood work all came back normal so my regular dr won't give me a referral even though I have suspected thyroid for a while. My hair was falling out in huge amounts. I have been depressed. This weekend I started feeling so mean and mad at nothing. I also now have the beginning of restless leg syndrome I think, which I read is linked to thyroid. Does this sound like it could be to you ladies? I am desperate for advice! I am going to call my dr tomorrow and demand a referral. I have insurance and am paying for the visit, so I do not know how she can deny me to right to go see a dr.

The symptoms are def suspect IMO. There is a spat in the medical community about what a normal thyroid level should be. The old doctors say its not hypothyroid until TSH is over a 5.0. However, the up to date research shows it should not be over 3.5 (some even say 3.0). So what I would do is ask for the specific number. Never rely on 'your result is normal) bc doing so could result in an untreated thyroid depending upon ur caregivers school of thought. I firmly agree w my endocrinologist that thyroid should be around the 3.0 mark. I get bad symptoms at 3.5 personally. I know many in my ppl are absolutely horrid symptoms at a four, so I'm inclind to believe the new current information unfortunately many doctors are behind in this. So def ask hat the actual number is. Bc if it is over 3.5 I would be getting a second opinion for sure. U may also check w ur insurance about referrals. Mine does not require a referral, so I don't have to wait for the doctor to agree about thyroid. Your insurance may or may not require a referral and if they don't I would def be looking into it.

Also TSH is commonly the only thyroid panel run, but it doesn't tell the whole story if ur doctor hasn't yet, I would demand another slew of blood work including Another TSH, T3, T4, Free-T3s, and Free-T4s. I would also request an uptake to see if u have the thyroid antibody that often causes PPT* (*note: having this antibody is not a requirement for a diagnoses, its just something commonly seen parrallel w PPT. I personally tested negative for the antibody every time).

One thing that commonly can help red flag hypothyroid is measuring your BBT (like how u would for charting for TTC). Many times BBT will be lower than it should (95F-97.0F). Now this is certainly not a diagnostic tool nor is it conclusive bc some women's BBT is not effected and this it would marker anything. But it's a good thing to check out over the course of the month and would give u some beef to ur argument if ur temps were lowered*(note: most doctors know nothing about the BBT and thyroid connection, so expectations would be low but if nothing else it *could* give u some more insight).

As a final note there are variations of PPT. The classic is when it goes hyper (usually around the 2 month PP mark, give or take) and then around 5 months PP (give or take) it goes hypo. Now that is the classic version of this disease but it presents in other ways too. Some women only see one phase of it. So for some they may only go Hyperthyroid. (Not as common). For others they ONLY go hypothyroid. This almost always occurs sometime within the first year if being PP and commonly occur around 2 months PP for those that only see the hyper stage and around 5 months PP for those that only experience the hypothyroid stage. Keep in mind though that these can occur at any time, those are merly averages.

I tried to call and make an appt today without a referral. I have called my insurance and they said I can self refer, but it is not that easy!! All the doctors want my medical charts and all these tests done prior. I am actually going back to my primary today and just wrote down all that you said to test for. I am going to ask for those tests to be done and a referral or I will be doctor shopping ASAP. I am tired of this. She said if your hair still falls out come back in 4 months and we will re-evaluate. Well, in the meantime, how am I suppose to survive with a 5 month old and a 2 year old? I hurt so bad and am so exhausted. Thank you for your reply!! I will keep you posted on the outcome.