I’m new here

[Topsy-girl]

Hi all I’ve been diagnosed with hyperthyroidism about 2 years ago and am now on 5mg carbimazole once a day. The endocrinologists that I see all say I should have RAI treatment and that I will most likely be left hypothyroid but not to worry as they can medicate me for that. I don’t see the point in swapping one problem for another one..what does anyone else think? The problem that I have now is, suddenly I have high blood pressure and high cholesterol..I take 8mg of Candesartan for the blood pressure but have declined statins for the cholesterol. I also suffer extreme sweating which is stopping me from doing things ,as it’s not a good look when I look like someone’s upended a bucket of water over me. I have restless leg syndrome too which keeps me awake when it’s bad. My GP tells me that it’s possible all these symptoms could be caused by my hyperthyroidism and if I have the RAI treatment it could help. I really don’t know which way to go and I’m hoping someone on here can help. Also, should I have private blood test done and if yes ..which ones? Thank you if anyone reads and advises me...I’m so sorry it’s all rather long winded.

[Marz]

Do you have any test results with ranges you could share ? We have had a few cases of late where the incorrect anti-bodies have been tested to confirm an over-active thyroid.

You are wise to come here and ask questions

Private testing allows you to have the correct tests that are often ignored in the NHS .

Keep asking questions and I hope you soon find solutions ....

[Topsy-girl in reply to Marz]

Thank you for your reply. I’m afraid I don’t have any results to share..I did ask once and was told there wasn’t any way of printing the results. I am quite prepared to have private blood testing but after looking at all the options I have no idea which ones to go for. 😳

[Marz in reply to Topsy-girl]

shaws has posted the links to the Private Testing companies - so take a look. You could always e-mail the companies and ask which tests would be appropriate. Based on earlier situations similar to yours - I would ask for the following - TSH - FT4 - FT3 and Anti-TPO & Tg. Also B12 - Folate - Ferritin & VitD.

[shaws Administrator]

Welcome to our forum Topsy-girl and those who have had RAI will respond when they read your post.

It's always wise to search if you aren't quite certain of what is going to happen especially if they're going to destroy your thyroid gland. You want to know for sure that they will give you the replacement hormone you deserve.

Those who have had RAI will respond when they read your post. I am hypothyroid.

I will give you a list of clinical symptoms of both hyper and hypo:-

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

There is also an Autoimmune Thyroid Disease commonly called Hashimoto's. This is diagnosed by thyroid antibodies being in your blood and they attack the thyroid gland until the person is hypo.

thyroiduk.org.uk/tuk/about_...

[Topsy-girl in reply to shaws]

Thank you...that’s a scary lot of symptoms and I seem to have quite a lot from both groups 🤔

[shaws Administrator in reply to Topsy-girl]

I don't think we realise that there's so many and that's the reason we feel awful. Slowly but surely as dose is raised you should begin to feel better with symptoms resolving. If you have a good doctor

[Marz in reply to Topsy-girl]

That is why I mentioned about earlier cases of members being mis-diagnosed. GP's can be lost at times and get it wrong - as can Endos

[SlowDragon Administrator]

You sound more hypothyroid than hyperthyroid, or a mix of both

Have you had TrAb or TSI antibodies tested to confirm definitely Graves' disease

Or TPO and TG antibodies tested too. This can be Hashimoto's or Graves

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Autoimmune thyroid disease often affects the gut and leads to low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

Come back on a new post worth results and ranges for all these when you get them

Professor Toft recent article saying, T3 may be necessary for many, especially after RAI. Ask your endocrinologist if they will guarantee to prescribe T3, should you need it

rcpe.ac.uk/sites/default/fi...

[Topsy-girl in reply to SlowDragon]

Thank you so much for a really quick response! I will get those tests done ASAP. I had a blood test many years ago which was for completely unrelated illness and part of the result said “celiac”?. I also had a prescription for vitamin d last year after a private health mot said I was low on it. My GP said I didn’t need to have a repeat for that as my level of this vitamin would be ok now I had had a course of it. Once again...I’m really grateful for your help.

[SlowDragon Administrator in reply to Topsy-girl]

You are legally entitled to printed copies of all your blood tests

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

Suggest you get copies of everything you have had tested. Come back here on new post for advice

Then get private tests for anything not tested

[Valarian in reply to Topsy-girl]

Before shelling out for private tests, I would insist on my legal right to see the most recent tests carried out by the endo/GP, since this may alter what you decide to order privately.

Considering that students typically need three science A levels to get into med school, and then undergo a lengthy and expensive education, I’m amazed at how many of them become technically incompetent to operate a printer when a patient asks for a copy of their results.

You could demonstrate how easy it is to use a printer by printing off this page from the U.K. Information Commissioner’s site ;). ico.org.uk/for-the-public/h...

[Topsy-girl in reply to Valarian]

You are so right!! I would LOVE to do as you suggest but it would take longer than getting the tests done myself..getting an appointment to see my doctor in the next month would be as rare as hens teeth so I think I will just get on with it myself. Even getting past the receptionist is like running through a minefield. 😓

[greygoose]

Your doctor was lying - or he's just computer illiterate! Of course there was a way of printing your results, there's always a way for someone who wants to succeed.

If your cholesterol has risen, then you are now hypo. Whether that's because you were never really hyper, took too much carbi or are in remission from Graves, we won't know until you've had everything tested. But, doctors always want to whip your thyroid out, because it makes things easier for them, and to hell with the patient!

[Topsy-girl in reply to greygoose]

Oh yes...up with patients and down with lazy doctors!! Good job it’s only the thyroid they want to whip out 😊.

[Valarian]

In general, untreated hypERthyroidism can get out of hand to a dangerous extent much more quickly than under-medicated hypOthyroidism. In practice, there are a lot of people who’ve chosen to continue with low dose Carbimazole rather than undergo RAI.

This might not be the right choice for everyone. Carbimazole typically requires more frequent monitoring than treatment for being hypothyroid, which might not suit everyone’s circumstances.

Also, sticking with Carbimazole long-term does assume that thyroid levels can be successfully controlled with a low dose.

Have you recently dropped out of remission for this to be suggested ? (Although high cholesterol in someone who is actively hyperthyroid sounds unusual).

[Topsy-girl in reply to Valarian]

I'm sorry ..I don't know is the answer to that! I think the endocrinologists got fed up with me saying I didn't know what to do re the RaI and I haven't been given another appointment..they just said to ring the hospital when I'd made my mind up and sent a rather snotty note to my doctor saying maybe I would have a mind to take the treatment AND to take the statins I had been offered.

[Valarian in reply to Topsy-girl]

If you had dropped out of remission, you would know because your Carbimazole would almost certainly have been increased, and you would probably have experienced some hyper symptoms. Maybe the endos would just prefer you to be discharged from their care, back to the GP. They can’t expect you to make an ill-informed decision, insist on a copy of the results.

[Topsy-girl in reply to Valarian]

Ok I will give it a go...thanks for the advice