Need some help been suffering with symptoms and... - Thyroid UK

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Need some help been suffering with symptoms and at a loss to know what to do.

Rklm profile image
Rklm
11 Replies

Have had Hashimotos for 20 years and have been able to manage mainly hypo symptoms, even during 2 pregnancies and 2 miscarriages. However 2 years ago I had an attack of vertigo which left me with a lightheaded, dizzy feeling. I was sent to an ent specialist who could only advise that it maybe a syndrome linked to stress. I then realised it maybe due to my Hashimotos and went gluten free, started taking supplements, probiotics. Whilst I saw some really great improvements in my health (weight loss etc) I still suffered with dizziness. In addition 8 months ago I started getting palpitations, and became very restless and agitated, permanently on the go, just couldn’t relax. A month or two later the symptoms became really bad, anxiety and panic attacks, acid in throat, dizziness, breathlessness, hair loss, palpitations, dramatic weight loss, waking up in the night and not being able to go back to sleep due to palpitations, scant period and then very heavy blood loss, sweats and restlessness. I decided to drop my meds from 125 to 100 as we were in lock down and felt these were hyper symptoms. Progressively my symptoms got better although my TSH level was 14.0....this lasted for a month and then I started feeling very tired and low...so I upped the levothyroxin back to 125. Again for a period I was feeling ok and then the dizziness returned and 3 days ago I have had really bad symptoms I started with, I am functioning but really suffering and feel alone with it. My doctor only looks at my TSH level and always wants to up it. I’ve just had additional tests done with Medichecks. If someone could help me understand what maybe going on as my symptoms seem to indicate I’m hyper though my results are contrary, and advise if there is someone I could work with in the South Wales area. My test results are as follows

B 12/ Ferritin/ Vit D3 all normal

TSH 4.58

FT3 4

Free thyroxine 21.9

TGA > 4,000

T Peroxidase 212.

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Rklm
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11 Replies
greygoose profile image
greygoose

B 12/ Ferritin/ Vit D3 all normal

'Normal' just means 'in-range'. But, 'in-range' isn't always normal, I'm afraid. Far, far better to always give the numbers: results and ranges, if you want people to help. We don't like the word 'normal', round here! lol

Apart from that, you are grossly under-medicated to have a TSH over 4. It should come down to 1 or under when on thyroid hormone replacement.

For the FT4/3, I can't comment because you haven't put the ranges. We need to ranges to be able to interpret the results, and as they vary from lab to lab, we need the results that went with our results. But, it does look rather like you're a poor converter: high FT4 and low FT3. And, it's low T3 that causes symptoms.

my symptoms seem to indicate I’m hyper though my results are contrary,

Be wary of symptoms, because a lot of them can be both under and over-medicated. Which is why it's difficult to dose on symptoms alone. We need the blood tests to back them up. But, it's not unusual to have symptoms of both hypo and hyper at the same time - especially with Hashi's, and you do have Hashi's.

acid in throat

You probably have low stomach acid. The symptoms are the same as for high stomach acid, so it's a little confusing. But, hypos usually have low stomach acid.

Rklm profile image
Rklm in reply to greygoose

Thank you really appreciate your feedback. Here are some further details.

TSH 0.27-4.2) 4.58

FT3 3.1-6.8). 4

Free thyroxine 12-22). 21.9

Iron 13-150). 44.8

B12> 37.5. ) 71.9

Vit D 50-175). 84.7

Look forward to any further feedback

greygoose profile image
greygoose in reply to Rklm

OK, so TSH too high.

FT3 too low. And, as T3 is the active hormone, it's low T3 that causes symptoms.

FT4 almost at the top of the range, so proof positive you are a bad converter.

Is that really iron? The ranges seems much too wide. Or is it ferritin? Either way, it's much too low. Yes, it's in range, but the ranges are just stupid. Ferritin should be more like 100 - or at least over mid-range.

B12 is too low. I take it that's an active test? Should be more like 100, too. But that's a stupid way of expressing a range! Sigh.

And, vit D would be better around 100, too. So, they're all too low even though they are in-range. Just being in the so-called 'normal' range does not always make them 'normal'.

No folate?

Rklm profile image
Rklm in reply to greygoose

Thank you for this it’s really appreciated. So although I’m getting these hyper symptoms I should get my TSH balanced? I had presumed because I was getting hyper symptoms I was getting to much thyroxin and therefore thought to decrease my meds. Is it always about optimising the TSH level? And should I increase my alternating 125/150 each day or should I should increase by 25.

And the supplements should help increase my T3 conversion. Can you recommend any other supplements to help.

Also I’ve started taking my medication before sleeping after reading somewhere this was optimal, would affect sleep at all by doing this?

Thank you again, I have felt so poorly and alone with this...I really appreciate your time and comments.

greygoose profile image
greygoose in reply to Rklm

But, your TSH is over-range! Why would you think you need to reduce your dose? The higher the TSH, the more hormone you need, because it's the pituitary telling your thyroid to make more hormone. Your thyroid, of course, cannot respond, so you have to take more levo, or whatever.

It's never about optimising the TSH. As I said above, the TSH is a pituitary hormone, a message from the pituitary to the thyroid. It doesn't make you feel anything, and just follows the levels of the FT4/3. The lower they are, the higher the TSH. And, vice versa. But, once the thyroid fails, the feedback link between the thyroid and the pituitary is compromised. So, despite what doctors thing, the TSH is a very bad indicator of thyroid status. You should not dose by the TSH.

The most important number is the FT3, so it's actually about getting the FT3 to a level that makes you well - and that place will be different for everyone. The TSH will follow the FT3 so by the time you get to the optimal dose for you, the TSH will probably be suppressed, but at least under one.

Let's just say that optimising your nutrients may or may not improve your conversion. There are so many reasons for poor conversion that it's difficult to know what has caused yours. Some people a just poor converters and there's nothing to be done about it.

Having said that, it is very important to optimise your nutrients, because it's not just about improving conversion. It's about all the other functions of thyroid hormones - they just work better when nutrients are optimal. But, you could try taking a little selenium - 200mcg selenium l-selenomethionine - and see if that helps.

As for taking your hormone at night, that - like most things thyroid-related - suits some people but doesn't suit others. You have to try it to see if it's better for you. :)

Rklm profile image
Rklm in reply to greygoose

Thank you I’m getting a much better understanding, your explanation has really helped. I really hope I can get on top of this now.

greygoose profile image
greygoose in reply to Rklm

You're welcome. :)

Rklm profile image
Rklm in reply to greygoose

Hi grey goose wondering if you could help me with my results and symptoms. You helped me understand so much last time Had a a few weeks of normality after increasing my dosage gradually from initially 100 to 150 but now having sweats trembling, dizziness, anxiety and can barely function. I had a test with the doctor and she said my results were normal. I have retested with Medichecks and can see my TSH is under, would this cause such severe symptoms and should i decrease meds by 25 mcg or is that too much.

Tsh 0.22 (0.27-4.2)

FT3 4.79 (3.1-6.8)

F thyroxine 22.1 (12-22)

TPO 207 (<34)

TBA >4000 (<115)

B12 67.7 (>37.5)

Vit D 74.7 (50-175)

Many thanks for your help

greygoose profile image
greygoose in reply to Rklm

Tsh 0.22 (0.27-4.2)

FT3 4.79 (3.1-6.8)

45.68%

F thyroxine 22.1 (12-22) 101%

TSH doesn't cause symptoms. It doesn't make you feel anything.

Low T3 causes symptoms, and your FT3 is still under mid-range. That's what's causing the symptoms. You are a poor converter and need T3 added to a reduced dose of levo.

Just reducing the levo by 25 would also cause your FT3 to drop.

Your vit D is also on the low-side, which won't help.

I'm afraid your doctor has no idea what 'normal' is!

Rklm profile image
Rklm in reply to greygoose

Thank you ...Where do I get T3 from and should I prescribe it myself.

greygoose profile image
greygoose in reply to Rklm

Well, your doctor won't prescribe it. You'd have to see an endo to get any chance to have it prescribed. Even then it's difficult - but worth a try, of course.

Failing that, ask on the forum for people to PM you their trusted sources.

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