Little help please

[Joant24]

I had a very busy weekend followed by Monday yoga then a long dog walk. Tuesday and Wednesday I could hardly get out of bed. I was exhausted and my whole body hurt, also very quiet and generally miserable (nothing new on that score these days). I’ve felt low and very tired before but not to this level. Today, Thursday, I’ve got energy and the motivation to get on with things. This doesn’t last long though. My questions are, is this a thyroid storm and when is it best to check my levels? I’ve sent for a Medichecks kit to see if I’m getting worse but not sure if I should use it when I’m feeling stronger, when I’m in the depths or somewhere in between? I’m not on any medication yet and my last quick check was recently

TSH 1.43 (0.27 - 4.2)

T3 3.9 (3.1-6.8)

T4 12.6 (12-22)

I have been feeling much worse recently and have been diagnosed with dupuytren’s contracture and raynard’s syndrome both apparently can be brought on by low thyroid levels. I feel like I’m slowly working my way down the list of symptoms until I either fall over or my TSH gets higher!!! Sorry for rant and thanks for reading x

[SlowDragon Administrator]

Looking at previous posts

When were vitamin D, folate, ferritin and B12 last tested

Ferritin and folate were both far too low in previous post

Ferritin 37.3 (13-150)

Folate 3.05 (3.89-19.45)

Did you get coeliac blood test done

Have you gone on trial of strictly gluten free diet

[Joant24 in reply to SlowDragon]

Vitamins tested last February which is why I ordered full whack this time. I’m taking vitamins and have a coeliac test but not done it yet. I’ve avoided taking the gluten free route yet, to be honest I can’t take the hassle from family, I’ve just not got the strength. I know this is silly but it does require some effort. Thanks for the quick reply.

[SlowDragon Administrator]

Definitely do Medichecks test after several very active days, when feeling exhausted

Only test early Monday or Tuesday morning

Always test as early as possible in morning before eating or drinking anything other than water

[Joant24 in reply to SlowDragon]

Thanks for that, the dog will love some extra long walks!

[SlowDragon Administrator in reply to Joant24]

Your GP must be well aware that you are hypothyroid……as underlined by his comments not to use your husband’s levothyroxine

As SeasideSusie says ……your high thyroid antibodies confirms autoimmune thyroid disease

GP could and should allow you a trial of levothyroxine

[Joant24 in reply to SlowDragon]

If only it was as easy as this! She says my levels are all within range and I’m dwelling too much on it being a thyroid problem!

[SlowDragon Administrator in reply to Joant24]

If Ft4 drops below 12 you should be started on levothyroxine

Ft4 has been right at bottom of range for months/years

Have you had cholesterol levels tested

High cholesterol levels linked to being hypothyroid

Had kidney function tested?

Low GFR linked to being hypothyroid

Some degree of central hypothyroidism is relatively common with Hashimoto’s…..but as greygoose says…..it’s rarely diagnosed

You likely need to see recommended thyroid specialist endocrinologist

[SeasideSusie Remembering]

Joant24

Looking at your profile this has been going on for 4 years now, your TSH remains low alongside very low FT4 and FT3. This would generally suggest a problem with the pituitary not responding to the low thyroid hormones to send the TSH signal to the thyroid which results in a high TSH, ie Central Hypothyroidism. However, you have raised antibodies so you know you have Hashimoto's. Can one have Central Hypothyroidism and Hashimoto's? I'm afraid I don't know the answer to that question.

Personally, if this was me I'd take no more, you've put up with enough. I would be asking GP for a trial of Levothyroxine to see if it helped, not just a couple of months but a decent trial of, say 6 months. If GP doesn't agree then I'd say that because of the amount of time this has been going on, how it has impacted your life and relationships, and your very obvious lack of thyroid hormone despite what the TSH says, then you will initiate your own trial with self sourced thyroid meds. But then I'm now a bit of a rebel where doctors are concerned, comes with years of being let down!

[Joant24 in reply to SeasideSusie]

This is how I’m feeling at the moment, I’ve put together info to take to GP, there’s one Dr who hasn’t shut me down so I’ll try her and then try a private endo from Thyroid UK’s list. Failing that I’ll go it on my own.

[Joant24 in reply to Joant24]

Thanks for info x

[greygoose]

A thyroid storm is when you have very high levels of thyroid hormone. You have extremely low levels. And, the problem here is that your TSH is not reflecting the levels of your thyroid hormones. Your TSH - a pituitary hormone - should be much higher with those Free levels. Doctors are only trained to look at the TSH. They know nothing about the thyroid hormones themselves.

It's quite possible that what you're looking at here, with your levels, is Central Hypothyroidism.

With Central Hypo, the problem lies with the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo) rather than with the thyroid itself (Primary Hypo). For some reason, your pituitary isn't producing enough TSH to stimulate the thyroid to make adequate amounts of hormone. With such low Frees, you would expect the TSH to be higher.

Central Hypo is only treated in the same way as any other form of hypo - i.e. Thyroid Hormone Replacement. But, the complication is that the pituitary makes a lot of other hormones, as well as TSH, and these could be low, as well. So, further testing is needed.

The difficulty is in trying to make a doctor - be he GP or endo - take the suggestion of Central Hypo seriously. They believe it to be rare, so don't bother to test for it. But given the number of cases we see on here, it's not as rare as all that!

I would suggest you do some research of your own before bringing it up with the doctor, so that you know what you're talking about and can avoid being fobbed off.

[Joant24 in reply to greygoose]

I have wondered about central hypo myself having read lots of articles but it’s so difficult trying to be coherent when your brain isn’t quite switched on. Although with antibodies they’ll never look elsewhere. I’ve printed out various bits and pieces and I’ll do my medichecks test when I’m exhausted and try the GP again. Failing that I’ll definitely go privately to a recommended Endo. Thanks for the info, much appreciated.

[greygoose in reply to Joant24]

You're welcome.

[Buddy195 Administrator]

I’m finding taking a turmeric supplement (with ginger & black pepper) to be helping with my circulation (endo suspects Reynaulds due to cold hands/ feet). On the Reynaulds forum, members have also seen symptoms improve with Ginko Bilbao (but I’ve not tried this yet). Very best wishes to you.

[Joant24 in reply to Buddy195]

That’s really helpful, thank you.

[Jazzw in reply to Buddy195]

Buddy195, can you recommend a particular brand of turmeric please? I’ve tried taking it in the past because having read up about it, I’m certain it’s something that should help me—but it didn’t. Could just have been what I bought—would be great to have a recommendation if you have one?

[Buddy195 Administrator in reply to Jazzw]

These are my current supplements from Amazon:Organic Turmeric Curcumin with Black Pepper & Ginger - 1520mg Per Serving - 180 Turmeric Capsules (Up to 3 Month Supply) - Vegan Turmeric Supplement, Soil Association Organic - Made in EU amazon.co.uk/dp/B089QCFCV4/...

[Jazzw in reply to Buddy195]

Brilliant, thanks Buddy195. How much do you take—just one a day?

[Buddy195 Administrator in reply to Jazzw]

I took 2 for a couple of months until my circulation improved & now take one. Maybe I will need 2 again when weather gets colder….

[Joant24]

👍