Pregnant, just diagnosed Coeliac with TSH averaging 4.5 plus low FT3 and low FT4 - doctors refusing to medicate - any ideas on what to do?

[Zoto]

Hi everyone,

I posted on here about a month and half ago: thankyou so much to all those who replied and gave me advice. Since my post, I have actually found out that I have coeliac disease (from very high antibodies not a biopsy as 5 months pregnant) and so have been gluten free for about 5 weeks. A lot of brain fog has lifted and sleep has improved somewhat, however, after an initial few days of increased energy, the constant fatigue is very much back with a vengeance. Since that post I have done a private thyroid panel with medichecks and another one with the hospital as the doctors wouldn't accept the medichecks results. I don't have the print out yet for my latest NHS results unfortunately but all blood tests so far have shown very similar results with my TSH averaging 4.5 (NHS ref range 0.2- 6.0 and medichecks range 0.27-4.2) and my FT4 and FT3 to either be just beneath the defined reference ranges or very close to the bottom of that range.

I have now seen one GP and two hospital consultants and despite me informing them of all the more recent guidelines around the world recommending a TSH of beneath 2.5 in pregnancy no-one will consider me anything but 'normal' based on my results and will not medicate me as it would be 'unethical' and would make me poorly apparently. My below range FT3 (based on their test) was also just dismissed as apparently T3 can vary so much throughout the day. Makes me wonder what the point of a reference range is if that's the case?! I have even drawn their attention to the link between Coeliac disease and hypothyroid and the need to support fixing the thyroid to help heal a leaky gut and vice versa but they refuse to believe I have a thyroid problem. My vitamin B12 is 399 ng/L (ref. range 180-910) and my ferritin level was 34ng/ml (ref. range 10-291) a few months ago so, again, in range but towards the lower end - none of the doctors want to do anything about them so I have started taking extra Vitamin B12 and Vitamin D as well as my usual ante-natal vitamin in the hope that might bump them up. After a heated discussion with a consultant today, she refuses to consider the thyroid being my problem but at least I have had another iron panel and Vitamin D blood test taken this afternoon. I have asked the consultant to write a letter to my GP saying that I want a referral to a private consultant although she has said that she is an expert in all things thyroid and it is unlikely anyone else will treat me at this TSH level unless they are 'unscrupulous' etc etc..

Sooo, does anyone have any ideas on what I can do now? I feel totally trapped into a corner with no way out other than to just try and eat well, take lots of vitamins and hope my body can manage the pregnancy. My baby is my main concern. I am considering the merits of self-medicating after my pregnancy and would welcome any advice on what avenue may be the best to look into, e.g. T4, T3 or NDT? Does it look like I could have a T4/T3 conversion problem - especially as 20% of this apparently takes place in the gut - of which mine could be damaged from the coeliac diesease? I tested positive for the main thyroid antibodies but they were within reference range so I'm assuming/hoping is isn't Hashimotos? Would this affect the medication approach?

Alternatively - could anyone recommend a good book to buy? or recommend any readily available thyroid support vitamins? My hope is that, as my TSH is not sky high and seems to have remained fairly consistent over the last five years, my gluten free diet might help in the long-term however apparently it can take a long time for your gut to heal once gluten free and that's only in the minority of cases where people heal completely.

So thanks for reading again and any advice on what I could do would be much appreciated, thank you so much, Zoe

[DoubleM]

I'm at a loss as to why you're not getting the proper treatment for your thyroid. You mention seeing consultants, were these obstetricians or endocrinologists?

I'm hyper so can't comment on how to medicate but I was told that the ranges for pregnant women increase or are higher than "normal ranges" so I had to reduce my meds in one pregnancy to stay in range.

[Zoto in reply to DoubleM]

Hi, thanks so much for your reply I have tried to show them the revised pregnancy ranges but they all just dismiss it with the consultant today insinuating that countries like America are over-diagnosing and medicating people unnecessarily because they are all private and getting paid for it! They don't seem to acknowledge any impacts on pregnancy, so very frustrating. Thanks for your reply anyway

[Nanny23 in reply to Zoto]

I live in the USA and find I have to educate my dr. on thyroid issues. I asked him to add t3 cause I showed him an article I read about it. He listened and did and feel much better. I have a friend who is also pregnant and she was diagnosed hypo. They put her on 50mcg. Levi. She lives is Canada. Docs think she's just hypo with the pregnancy. Have you see a good obstetrician? You are doing all the right things. I don't understand why they are not listening to you. Is there maybe a private dr. You could see if you can afford it? I feel your frustration and wish you well. Keep us posted and stay well.

[Hidden]

Hi Zoto

Sorry to hear you're having such terrible issues.

I'm not experienced enough to comment on pregnancy but with regard to books. I did buy two books, both of which I found useful. One was the 'Stop the thyroid madness' book, revised edition. The other was Dr Barry Durrant-Peatfield's book 'Your thyroid and how to keep it healthy'

I've had extensive blood tests and the consultant I've seen in London tends to dismiss the T3 results saying T3 varies a lot throughout the day.

[Zoto in reply to Hidden]

Hi, thanks for letting me know about the T3, that's interesting to know. I will look at the STTM book thanks, the website has already been useful so far. Thanks again,

[Clutter]

Zoto,

It's not uncommon to have pregnancy induced hypothyroidism. To ensure good foetal development and to avoid post-partum psychosis you should be prescribed Levothyroxine during your pregnancy. If thyroid levels normalise after delivery Levothyroxine dose can be withdrawn.

Show your doctors the British Thyroid Association Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee

Specifically this extract:

13. The serum TSH reference range in pregnancy is 0·4–2·5 mU/l in the first trimester and 0·4–3·0 mU/l in the second and third trimesters or should be based on the trimester-specific reference range for the population if available. These reference ranges should be achieved where possible with appropriate doses of L-T4 preconception and most importantly in the first trimester (1/++0). L-T4/L-T3 combination therapy is not recommended in pregnancy (1/+00).

onlinelibrary.wiley.com/doi...

[Zoto in reply to Clutter]

Hi,

Thanks, once again, for your help Clutter. Unfortunately I've taken print out after print out to them and shown them this info and they just blindly refuse to acknowledge any of it. It is so incredibly frustrating. I would feel better at least if they gave me an appropriate answer to this but nothing. Just I am 'normal' and that's that. When I asked about trying a low dose to see if my symptoms are relieved etc and that it isn't supposed to be harmful etc I just get nothing but I 'dont have a thyroid problem' and any medication would be unethical and potentially cause harm. So I'm back to square one! My only hope is to research a good endocrinologist and see if I can get referred to them privately but all this is taking even more time anyway thanks again for your help.

[Clutter in reply to Zoto]

Zoto,

Have you shown them the BTA statement? I can't believe they will disregard the BTA guidelines. In your position if I couldn't persuade my GP or other doctors to prescribe Levothyroxine I would buy it online and self medicate. Send me a PM if you want sources.

[Zoto in reply to Clutter]

Thanks for this. Darn it, I didn't specifically mention that it was BTA guidelines. This could be my last chance at being listened to I guess so I think I will ring the doctors tomorrow and ask for an appointment with another GP about the referral to a private endo and also make sure I take this and make it clear it is BTA information. Thanks so much, x

[Clutter in reply to Zoto]

Zoto,

Print off the BTA Statement and insist it is included in your medical record and say you intend making a formal complaint that you are not being treated according to best practice and guidelines.

[Zoto in reply to Clutter]

Oh that is a fantastic idea thankyou so much. I will get straight onto the doctors tomorrow morning for an appointment. Many thanks again.

[Angel_of_the_North]

The guidelines say that during pregnancy TSH should be at the low end of the range 0.4 (or so) to 2.0, so you should be getting treatment.

[Zoto in reply to Angel_of_the_North]

Hello,

Thanks for this. I have actually just called the British Thyroid Association this morning to try and see if they can give me some more information to arm myself with when I see the doctor tomorrow and, although very polite and helpful, she has actually agreed with the doctors and said that my thyroid levels do seem fine and that they wouldn't medicate me despite being pregnant. Apparently the pregnancy trimester-specific guidelines are for those already diagnosed with hypothyroidism and currently receiving treatment as it is already proven that their thyroids are failing etc. Apparently I wouldn't see any clinical benefit from treatment and just to check on it after I've given birth?! Really don't understand why they are so resistant in just putting me on a very low dose to see if my symptoms improve/ So I seem to have reached the end of the road on this one, in terms of NHS support. I think my only option now is to try and find a naturopath/nutritionist perhaps that can advise me on the best diet and supplements I can take to help heal both the thyroid and coeliac.

Thanks again for your response.