Thyroxin

[Imaan]

Hi all,

In a nut shell I have high thyroid peroxidase antibodies (indicating that I have an auto-immune disease). All Thyroid tests have come back normal. However my consultant said she wants to put me on Thyroxin asap (due to my history of miscarriage), despite my Thyroid levels being normal It's a very specialised area and my GP wouldn't even prescribe me the Thyroxin, so she's had to write a private prescription.

Does anyone have similar experiences?

 

[ald]

Do you know what your tsh, t4 and t3 level are?

In the UK it is seen normal for your tsh to be below 5 and some places 10, anywhere below these levels doctors are advised not to treat. BUT, in order to have the best chance of not miscarring it is best to have a TSH of 1-2 - therefore there is a massive area what is considered normal but at increased chances of miscarriage IYKWIM.

Here in Germany a normal TSH is between 0.5 and 2.5, which again is totally different from the UK but gives the best chance not to miscarry due to thyroid problems.

I hope this helps.

 

[Imaan]

Hi Ald,

First of all, thank you for your reply and I am so sorry to read of your loss I also had a miscarriage back in September so I'm here to talk anytime if you would like to PM me

I just checked through my results and they are as follows:

- TSH level = 2.29 mu/L
- Thyroid Peroxidase Antibody level = 279 kiu/L – (High)
- Serum free T4 level = 16.2 pmol/L
- T3 (was normal but can't seem to find the result)

So I guess my TSH falls into the normal category right?

Here is the study that my consultant was talking about. This is why she would like me to start on low dose Thyroxin:

https://www.bmj.com/content/342/bmj.d2616

I'm still really unsure what to do though

Are they treating you for your underactive thyroid?

 

[nc1998]

Hi Imaan,

When I was first treated for autoimmune thyroid disease my tsh wasn't much higher than that - can't remember exactly - maybe 4 or 5.

In the early stages of the disease I have heard the levels can fluctuate. TSH 1-2 is considered ideal for conceiving, but you were certainly pretty close to that at your last test. A low dose of thyroid meds + retest in 4-6 weeks to check your levels certainly sounds fine, but if you were uncomfortable taking the meds you could definitely find other doctors that would let you go unmedicated at that level. Do you have any symptoms of hypothyroidism - do you have regular cycles?

I've had autoimmune thyroid disease for about 7 years now - and I've had 2 kids during that time - both were conceived when my tsh was between 1-2. Your thyroid hormone needs go way up during early pregnancy - I had to increase my dosage several times in the first trimester. At 5 weeks pregnant I was already hypothyroid, even though it was perfect before conception. So whether you start taking thyroxine or not, do get your levels checked often during early pregnancy.

Good luck!

 

[ald]

Hi Ald,

First of all, thank you for your reply and I am so sorry to read of your loss I also had a miscarriage back in September so I'm here to talk anytime if you would like to PM me

I just checked through my results and they are as follows:

- TSH level = 2.29 mu/L
- Thyroid Peroxidase Antibody level = 279 kiu/L – (High)
- Serum free T4 level = 16.2 pmol/L
- T3 (was normal but can't seem to find the result)

So I guess my TSH falls into the normal category right?

Here is the study that my consultant was talking about. This is why she would like me to start on low dose Thyroxin:

https://www.bmj.com/content/342/bmj.d2616

I'm still really unsure what to do though

Are they treating you for your underactive thyroid?

Thank you

What dose of thyroxine are you on?

Last year I had an overactive thyroid but with all the symtoms of an underactive one, then over the course of a few months (and removing all possible iodine from my diet) it went underactive, I also had very high levels of antibodies. I am now on thyroxine for life and get my blood tested every 4-6 weeks as my levels move so much Im constintantly needing to change my meds to try and stablise my TSH. The doctors don't feel that my thyroid is to blame for my miscarriage but my very low progestrone levels (a whole different book!).

If your doctor feels this is worth a try, then why dont you do a trial period of using the meds, but you will need to make sure you have regular blood tests to ensure you dont go overactive.

Feel free to PM me if you ever want to chat, advice, rant etc x

 

[Imaan]

Hi Imaan,

When I was first treated for autoimmune thyroid disease my tsh wasn't much higher than that - can't remember exactly - maybe 4 or 5.

In the early stages of the disease I have heard the levels can fluctuate. TSH 1-2 is considered ideal for conceiving, but you were certainly pretty close to that at your last test. A low dose of thyroid meds + retest in 4-6 weeks to check your levels certainly sounds fine, but if you were uncomfortable taking the meds you could definitely find other doctors that would let you go unmedicated at that level. Do you have any symptoms of hypothyroidism - do you have regular cycles?

I've had autoimmune thyroid disease for about 7 years now - and I've had 2 kids during that time - both were conceived when my tsh was between 1-2. Your thyroid hormone needs go way up during early pregnancy - I had to increase my dosage several times in the first trimester. At 5 weeks pregnant I was already hypothyroid, even though it was perfect before conception. So whether you start taking thyroxine or not, do get your levels checked often during early pregnancy.

Good luck!

Thank you ever so much for your reply. It's very helpful and I made a decision this morning that I'll take the Thyroxin. It's 25 micograms per day. My consultant was willing to go ahead with letting me have the IVF but she thought I should maybe try it since I've had 2 miscarriages and due to the presence of auto antibodies. I don't have any symptoms of an underactive or overactive thyroid and my cycles are spot-on - perfect!

The good thing is that Thyoid levels are checked regularly anyway during pregnancy as apparently pregnancy makes the Thyroid glad work extra hard. In this study though, the long-term effects (on mother and child) of women with normal thyroid function, taking low dose Thyroxin, has not been researched.

Thanks again for your help

 

[Imaan]

I just got my TSH result back and it's increased since last year. It's now 3.27mu/L. My T3 and T4 are normal. Does that mean I have Hypothyroidism?

 

[nc1998]

I just got my TSH result back and it's increased since last year. It's now 3.27mu/L. My T3 and T4 are normal. Does that mean I have Hypothyroidism?

That is still in the normal range for most labs... but if you have high antibodies then you do have autoimmune thyroid disease, and most likely at some point you will end up on meds. (Not everyone does, but I think almost all do.) Obviously you have to make this decision with your doctor, but if it were me, I would probably take the thyroxin and see how you feel/what your lab numbers do. Do you like your endocrinologist? What are they recommending?

I do remember I spent a lot of time worrying about my diagnosis when I first was told I had thyroid disease, but after so many years on replacement hormone (and dealing with other auto-immune issues later), I've decided it's not such a bad disease to be stuck with! Good luck!

 

[Imaan]

I just got my TSH result back and it's increased since last year. It's now 3.27mu/L. My T3 and T4 are normal. Does that mean I have Hypothyroidism?

That is still in the normal range for most labs... but if you have high antibodies then you do have autoimmune thyroid disease, and most likely at some point you will end up on meds. (Not everyone does, but I think almost all do.) Obviously you have to make this decision with your doctor, but if it were me, I would probably take the thyroxin and see how you feel/what your lab numbers do. Do you like your endocrinologist? What are they recommending?

I do remember I spent a lot of time worrying about my diagnosis when I first was told I had thyroid disease, but after so many years on replacement hormone (and dealing with other auto-immune issues later), I've decided it's not such a bad disease to be stuck with! Good luck!

Ooo that's positive hun, thank you

Thanks for the info. I am ok about it actually. There are much worse diseases than this. Tbh the doctor just totally ignored the TSH result and focussed on the fact that I have high Rhuematoid factor. He said the high auto-antibodies must be due to having arthritis and he has referred me to a Rheumatoligist. so they haven't recommended anything for the Thyroid issue. A while back I asked him if he could perform a blood test (can't recall the name of it) to determine whether I have Hashimitos or if the auto-antibodies are due to a different auto-immune disease such as arthritis. But he didn't want to do it. I might just have to see a private endocrinologist for that.

Although in the normal range, I'm glad I started taking the Thyroxin than my consultant recommended. I hope it will also meet they keep a close eye.

 

[nc1998]

I just got my TSH result back and it's increased since last year. It's now 3.27mu/L. My T3 and T4 are normal. Does that mean I have Hypothyroidism?

That is still in the normal range for most labs... but if you have high antibodies then you do have autoimmune thyroid disease, and most likely at some point you will end up on meds. (Not everyone does, but I think almost all do.) Obviously you have to make this decision with your doctor, but if it were me, I would probably take the thyroxin and see how you feel/what your lab numbers do. Do you like your endocrinologist? What are they recommending?

I do remember I spent a lot of time worrying about my diagnosis when I first was told I had thyroid disease, but after so many years on replacement hormone (and dealing with other auto-immune issues later), I've decided it's not such a bad disease to be stuck with! Good luck!

Ooo that's positive hun, thank you

Thanks for the info. I am ok about it actually. There are much worse diseases than this. Tbh the doctor just totally ignored the TSH result and focussed on the fact that I have high Rhuematoid factor. He said the high auto-antibodies must be due to having arthritis and he has referred me to a Rheumatoligist. so they haven't recommended anything for the Thyroid issue. A while back I asked him if he could perform a blood test (can't recall the name of it) to determine whether I have Hashimitos or if the auto-antibodies are due to a different auto-immune disease such as arthritis. But he didn't want to do it. I might just have to see a private endocrinologist for that.

Although in the normal range, I'm glad I started taking the Thyroxin than my consultant recommended. I hope it will also meet they keep a close eye.

I hope you get some good answers from the rheumatologist; and I think you're right that it might be good to see an endocrinologist if your ob/gyn or general doctor doesn't monitor your thyroid as much as you'd like. I know my ob/gyn would probably have only checked mine once/trimester while pregnant and annually for non-pregnant. I like to get mine done every 6 months while not pregnant just to be sure.