Husbands tsh 15.9, he feels awful but can't get to see dr!! Help!! Xx

[Weedy1987]

[Hidden]

Sorry you haven't had responses to your questions sooner - I can imagine how distressing this is. Is it your GP he can't get to see? I don't think you can wait for the endo to send an appointment.

I know your husband reacted badly to an increase in Levo last time.

[Weedy1987 in reply to Hidden]

We have been waiting to see the endo currently over 30 weeks like I stated, as the gp will not change his medication because he is under the specialist. My husband has had these high tsh reading for over a year now, but what we want to find out is what effect this has in his body? His t4 is really good, but this tsh will not go down. He suffers with carpel tunnel (we believe this is tyroid related) really achy legs, can't think straight, head aches, chills and many more! We also want to know if this can effect type 1 diabetes as my husband has noticed his blood sugars are all over the place!!

[Hidden]

Weedy, what's his FT4? It seems unlikely that it could be really good - in range doesn't mean good, necessarily. It's quite astonishing though that your husband's GP isn't escalating the fact that the endo is cancelling appointments and making your poor husband wait so long.

Hypothyroidism does indeed have a knock on effect with diabetes. I'd imagine your husband's body is trying to compensate any way it can, given there's no available energy - that's what thyroid hormones do, drive metabolism, producing energy from the cells.

How poorly is he? Is it "pitch up in A&E" poorly, or bedridden poorly?

You need your GP to take some action if he's unwilling to prescribe. I think it might be time to complain to the GP practice manager. This has gone on too long.

[Weedy1987 in reply to Hidden]

Thank you so much for your responses, his t4 was 15.4 which means nothin to me to be honest, we have a lack of understanding as to what all of these figures mean. But my husband is very unwell but struggling on as he needs to work. Do you also know if his original goitre could grow back? As he is struggling eating? It was supposed to be re scanned a yea after the treatment but as we haven't seen the endo this has not been done. We are going to try and get a gp app tomorrow. X

[Weedy1987]

Thanks for reply, he does take 100mg of thyroxine daily but he really doesn't feel any better, he suffers quiet bad with insomnia. His nurse did check for vit d and calcium and was all normal. I will ask them to check for the other things too, thanks. So you should be worried if the tsh stays persistently high? It has been double figures for nearly 2 years! X

[Marz in reply to Weedy1987]

Don't accept the normal response. Ask for copies of the results and post here with ranges....they may be within the range but not OPTIMAL - which is where they need to be....

[Weedy1987]

Thanks for the adivice we shall speak to gp tomorrow. Would a test for the t3 highlight if their is an issue with it? No one has ever mentioned his t3 before. He has been on 100mg of thyroxine since January and he was in 75mg before that since July last year since having radioactive iodine for his goitre.

[helvella Administrator Thyroid UK]

Although it wouldn't be likely to do more than a very little, some people find taking their levothyroxine at bed-time helps.

Have a look at the comments on this HU/TUK poll:

healthunlocked.com/thyroidu...

I take mine at bed-time.

It is also important to realise that it must be taken away from foods, drink (other than water), supplements and other medicines. So many things interact in various ways - most often to reduce absorption.

In my view, a raised TSH should not be ignored. Even if it is only slightly high - like 3.5. To leave it above 10 for an extended period is simple incompetence.

Thyroid levels do interact in complex way with sugar levels.

Please ask politely or shout and scream but do not let this carry on. Contact whoever you need to - surgery manager, PALS, the consultant endo's secretary - wherever possible in writing (for evidence).

Rod

[Weedy1987]

Thank you so much for your advice, I have been in touch with pals and hopefully they will help me resolve this issue. We feel very lost and really isolated like no body wants to help!! You have all been very helpful!

[Weedy1987]

The impression I seem to get from any health care provider my husband goes to is that his elevated tsh is nothing to worry about, we have been in a and e and his results 20.6 (my husband was there with breathing difficulties) and the dr said that's nothing to worry about high tsh it's the t4 they worry about! The nurse at my local surgery said the same! It's a complete mindfield! So my husband now thinks that perhaps feeling this ill is all in his head but surely the high levels must do something to the body!

[greygoose in reply to Weedy1987]

Weedy, as far as I know - as far as anybody knows - the TSH (Thyroid Stimulating Hormone) doesn't have any effect on anything except the thyroid gland. It only does what it says - stimulates the thyroid to make more thyroid hormone. The problem is that the thyroid isn't responding.

Even without seeing the ranges (the figures in brackets after the result) that T4 looks pretty low. And that is what is making your husband feel ill, not the TSH itself. The T4 should be at the top of the range, not the bottom. Just because it's 'in range' doesn't make it right. So-called 'normal' (in range) is not the same as 'optimal', which is the level at which he feels well.

I don't know what you can do about a bloody-minded, ignorant, uncaring doctor - which is what you seem to have - but your husband really needs an increase in meds. It's time to stand up on your hind legs and make a fuss! Nobody cares about your health - or has a vested interest in it - like you do! So if you just meekly accept what they say and go away, they're not going to bother to give you the care and treatment you need and deserve - that you have a legal right to! So, you have to insist. Don't ask, tell them - politely but firmly - what you want and what you intend to get, come hell or high-water! Go on, girl! You can do it!!!

Hugs, Grey

[eeng]

After RAI people usually need a full replacement dose of Levothyroxine. 100mcg isn't a full replacement dose, he should be on somewhere between 150mcg and 250mcg a day typically. He is undermedicated and has all the symptoms of being undermedicated. It is cruel of the 'healthcare professionals' to treat him like this. If all else fails you could buy some more Thyroxine online and see if that helps at all. It's what I would do personally.

[Weedy1987]

So we have been to see the gp today and he has upped his thyroxine by 25mg, with regards to his appointment being so over due by endo the gp says there is nothing he can do about that?!?