Hyperthyroidism - treatment sequence? - Thyroid UK

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Hyperthyroidism - treatment sequence?

Zudukk
Zudukk

Hi guys

I've been diagnosed with hyperthyroidism and referred to see a consultant, which I'm researching now.

I can see from my limited research that there are approximately 2 or 3 different treatment options, including some medication, radiates iodine and finally surgery.

I'm wondering if all 3 have to be tried sequentially, or if the Dr may recommend skipping 1 or 2 treatment options?

Thanks

Z

50 Replies
oldestnewest

You should definitely try medication first because getting your thyroid destroyed with radiation, or having it removed with surgery is life altering and should be considered to be a last resort. At the very least you will end up hypothyroid, and if you have Graves' Disease then getting treated with RAI - Radioactive Iodine - can make existing Thyroid Eye Disease worse or it can create an eye problem where there wasn't one before.

The other issue is that, unless you've had Graves' Disease proven with the relevant tests, it might turn out that you actually have Hashimoto's Thyroiditis (Hashi's) which makes people hyperthyroid temporarily, but eventually makes people hypothyroid. Also, Graves' can go into remission too, if you are treated appropriately and are lucky.

Don't be willing to destroy or lose your thyroid without a fight.

A couple of links you might find helpful :

labtestsonline.org.uk/under...

Note in the above link you have to click on all the + signs except the first one to see all the info available.

You should also find this site helpful :

elaine-moore.com/

Good luck.

Zudukk
Zudukk in reply to humanbean

How has RAI helped you, if you mind me asking?

humanbean
humanbean in reply to Zudukk

I've never been hyperthyroid. I've always been hypothyroid. But I've learned a lot on this forum, including some of the pitfalls of hyperthyroidism treatment.

Have you arranged to a specialist endocrinologist? Patients are often started on antithyroid medication while waiting for a referral to be set up. With current Covid delays the wait can be longer than usual.

Confirming your diagnosis should be your first step, If doctor suspects Graves is should be confirmed with positive antibodies for Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb). There is also Thyroid Peroxidase (TPO) and Thyroglobulin (Tg). They can be positive in Graves AND Hashimoto's. They are often higher is Hashimoto's / autoimmune thyroiditis which ultimately causes hypothyroidism but can cause transient hyperthyroidism.

Usually NHS give a time frame of around 18 months on medication so see if Graves goes into remission. Then radioactive iodine is offered, I have hyper due to a nodule and was offered it much sooner, at first appointment, before my diagnosis was confirmed. Surgery is used when RAI unsuitable. You have time to do your research and decide what’s best for you.

Recommend keeping your own record of blood results and diary of symptoms. Have you seen your results? eg do you have online access or a print out? Post what you have had tested on here.

Zudukk
Zudukk in reply to PurpleNails

I was diagnosed with an over active thyroid on Friday so yet to know if its Graves or something else.

I have my employer's insurance thankfully, so wanted to come here to seek out a reputable practitioner.

I forgot to ask for my blood work to be printed /emails from my GP and I've found that don't given to you as a matter of course; you got to ask.

I wanted to get a feel for what a treatment plan might look like, but I suppose its too early to tell without an actual diagnosis.

Valarian
Valarian in reply to Zudukk

First thing is to get definite confirmation of the cause of your hyperthyroidism. This should be via TRAb or TSI antibody testing. If this is positive, you have Graves’; if it’s negative, you should push for further investigation.

If you have Graves’, you can expect to be on anti thyroid treatment (usually carbimazole) for 12-18 months in the hopes of achieving remission. The antithyroids work by inhibiting production of new thyroid hormone, but they don’t affect existing stores within the body, so it can take six to eight weeks before you feel noticeably better.

Remission is achieved in around 50% of cases. If this doesn’t work, it will be time to consider the three options: remaining on carbimazole for the long term (if stable thyroid levels within the reference range can be maintained with a low daily dose of carbimazole), RAI or thyroidectomy. Each option has pros and cons.

These links may be useful:

thyroiduk.org/hyperthyroid-...

btf-thyroid.org/Pages/Categ...

cks.nice.org.uk/topics/hype...

Zudukk
Zudukk in reply to Valarian

Thank you for this - really good information.

May I ask if beta blockers will be prescribed alongside Carbimazole?

Valarian
Valarian in reply to Zudukk

If you’ve got symptoms such as breathlessness, tremor and a racing heart rate, it’s worth asking about beta blockers, but I don’t think they are prescribed routinely.

Zudukk
Zudukk in reply to Valarian

Thanks I've actually already been prescribed them, but they don't help much l/at all with the shaking and breathlessness.

Oh well!

PurpleNails
PurpleNails in reply to Zudukk

Propranolol is often prescribed and usually intended to be temporary. It will help with relieving the symptoms while the anti thyroid works on the cause of the symtoms.

Propranolol is chosen as its known to have a mild anti thyroid affect and can lower FT3. By reprioritising the conversion of T4 to RT3 over T3, so it helpful for hyperthyroid. But do not stop propranolol abruptly. This happened to me and it triggered migraines. I have been back on it at a lower dose ever since. On the month I stopped taking it my FT3 rose quite high & disproportionately Take lowest dose to feel well and wean down slowly.

Zudukk
Zudukk in reply to PurpleNails

How did the RAI treatment work for you?

PurpleNails
PurpleNails in reply to Zudukk

I refused it, I’m still taking carbimazole.

Zudukk
Zudukk in reply to PurpleNails

Sorry, wrong reply button

But, how has this medicine helped you? Any improvements and / or side effects?

PurpleNails
PurpleNails in reply to Zudukk

Carbimazole lowered my levels to safe range. It works by stopping iodine being converted to a usable form for the thyroid to make new T4 & T3 once the body uses the existing stores you need dose adjustments to keep the levels stable. My TSH has taken 2 years to begin to rise so you need to be monitored by FT4 & 3. One endo wanted to increase my medication to raise the TSH, even though my FT4 & 3 were already low in in the range so I “forgot” to increase it. My thyroid levels still natural lowered further on the existing dose I was on, so the nurse specialist reduced the medication to allow the levels to rise back into range again.

I have had a little hair loss, which may have been the thyroid levels or the medication. I didn’t lose weight before diagnosis but gained 4kg the following year. But I have lost a lot of weight recently through diet.

The medication for some has side effects from mild to very serious, the risk never completely disappear but in theory you can remain on it long term. As my nodule is not autoimmune I do not have the possibility of remission / relapse as with graves so I am facing life long medication, or treatment if it absolutely necessary.

Zudukk
Zudukk in reply to PurpleNails

Do you have any suggestions or links to good diet plans / nutritional tips?

PurpleNails
PurpleNails in reply to Zudukk

Key nutrients tested and supplemented to optimal not just in range.

I have seen some suggest Vitamin C, which is generally a safe supplement without prior testing.

I often see l-carnitine recommended to enhance effectiveness of carbimazole. I take it and was able to lower carbimazole dose. Although my weight loss likely more to do with this.

As I was diagnosed type 2 diabetic I was recommended to reduce carbs. I aim for around 80 carbs a day this is considered low but not “Keto” low. You need a certain amount for conversion of FT4 to FT3. A well balanced diet, gentle exercise. Many try gluten free but I haven’t felt the need for that.

Introduce new supplements gradually (eg two weeks apart) to see if you react to any.

I was dreadful for remembering to take my medication, and then getting the timings right. Some supplements needed to be taken away from others. In the end I got a pill organiser & downloaded an app which reminded me what to take when. Spreading everything out throughout the day also helped remind me to drink plenty of water frequently something I would also forget!

Hi PurpleNails - I am hoping I can ask for details around your statement above.... you wrote - "once the body uses the existing stores you need dose adjustments to keep the levels stable. My TSH has taken 2 years to begin to rise "....

I have Hashis (only ever needed a small dose of levothyroxine) but was severely overmedicated by a functional doc who gave me a massive dose of T3 but didn't monitor labs in 2018 for over 10 mths and that caused a horrible set of hyper symptoms - had to take a leave from work :(. My new end, who is good and shows compassion, reduced thyroid meds and told me it would be around 18 months or so to feel better and for my TSH to go up. Well, sure enough, at about 18 months or so I FINALLY see those horrible hyper symptoms fading replaced by hypo symptoms and now TSH has started moving up and mildly out of range again.

My doc hasn't been good at explaining why it takes so long for body to "reset" - then I read your statement and it sounded similar. Why so long for TSH to move up again? Does it just take that long for the body to use up "existing stores"?? I have suffered so much these last 2+ years over this! Thank you for any feedback.

Its up to an 8 weeks process for the body to use pre existing stores but the TSH can take longer to respond. It trails behind considerably (even a healthy individual). It why patients “beg” for test of the actual thyroid levels (FT4 & FT3) as the TSH does not truly reflect the whole picture.

This is especially true once you have had disfunction. The feed back mechanism controlling this can become disrupted, sometimes never recovers. Search HPT axis (Hypothalamic-Pituitary-Thyroid).

Oh interesting! Yes my doc is good about testing all of the markers. So do you think it is odd I suffered from those hyper symptoms for 18 months while waiting for TSH to start increasing? T4 and T3 were normal low. Symptoms were - multiple BMs, extreme fatigue/weak, insomnia, sweating, anxiety, acne, head pressure.

sroth2407
sroth2407 in reply to sroth2407

And thank you for your response!

TSH doesn’t cause symptoms, it’s just what signals the thyroid to produce new hormones, or not. It’s the thyroid levels which affect symptoms, particularly FT3 which is the active hormone. what were your levels when you were feeling unwell. They may have been too low. Symptoms at either end can be very similar.

When I was overmedicated FT3 was around 6.5 (2.0 - 4.4) and FT4 was around 1.5 (.8 - 1.7) for months (and yes very sick but not told it was my thyroid!). After I stopped thyroid meds FT3 dropped to and has hovered around 3.0 ever since and FT4 dropped to and stayed around 1. But the debilitating hyper symptoms continued through the ups/down until I hit about 18 months with no meds and finally they have faded. Crazy! I know not everyone buys into Reverse T3 being a problem, but initially my Reverse T3 was high and Reverse T3 ratio way too low (it was 12 and should be >20). It has taken this long for Reverse T3 to finally lower so can't help to think that is related. I see a world renowned endo next month who is going to review my case so interested to see what he says.

Your symptoms may have been nutrient related, having hyper levels & for so long is know to deplete vitamins, did you have b12, ferritin, folate and vitamin d checked at any time?

Yep had vitamins tested routinely and all at least mid range. Have had a myriad of tests bloods, scans, mris, unbelievable amount of testing but only can pinpoint the reverse T3 too high after starting desiccated thyroid (which they are finding for some people desiccated can cause Reverse T3 to raise) - that is when the symptoms started but that doc didn't pay attention to RT3 - then I had the massive overmedication - and then 18 months to shake it all and for RT3 to finally come down to a nice low number of 9.9 (9 - 24) - I have suffered soooo much.

helvella
helvellaAdministrator

As I understand, most surgeons (and anaesthetists) would want you not to be significantly hyperthyroid when operating. Surgery, even for non-thyroid reasons, while hyperthyroid is more likely to cause a thyroid storm - which is a very serious issue.

Therefore, medication would almost invariably be step 1.

Hello Zudukk

To answer your question I have had RAI and wouldn't recommend it.

Primary hypothyroidism caused by RAI is said to be more difficult to treat.

RAI can trash your vitamins and minerals.

RAI can cause symptoms similar to Sjogren's Syndrome.

RAI is also taken up to a lesser extent by other glands and organs in the body.

RAI is known to trigger Thyroid eye disease.

RAI can trigger fibromyalgia type symptoms throughout your body.

RAI can raise the risk of cancer in the small bowel and breast.

I have had Radioactive Iodine treatment for Graves Disease back in 2005 becoming increasing unwell from around 2013/14 and have experience of first four of the above and only found all this out by reading the book Graves Disease - A Practical Guide - written by Elaine Moore.

Elaine Moore has Graves and had RAI treatment and finding no help with her continued symptoms back in the late 1990's started researching this poorly understood and badly treated auto immune disease herself. She now has several books published and runs a well respected, well researched website on all things Graves for everybody to freely use, world wide.

RAI is toxic waste that slowly burns your thyroid out, in situ, rendering your hypothyroid.

Hypothyroid is not easily treated when you have an autoimmune disease, and if you loose your thyroid to either RAI or surgery, you will still be on medication for life, routinely prescribed just T4- Levothyroxine, which doesn't offer patients all that same known thyroid hormones that their own thyroids supported them with.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 plus trace elements of T1, T2, and calcitonin.

Currently the NHS routinely offer only thyroid hormone replacement with T4 - levothyroxine, though there are other thyroid hormone replacements available, namely T3 - Liothyronine and Natural Desiccated Thyroid ( NDT ) but you may well find difficulty obtaining either on the NHS.

The thyroid is a major gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual well being, your inner central heating and your metabolism and I deeply regret this treatment.

I too found no understanding of my continued symptoms after RAI and being treated with just T4 - Levothyroxine, with anti depressants prescribed and thrown into the mix when I couldn't cope any longer on monotherapy and I have now resorted to self medicating, buying my own thyroid hormone replacement and getting my life back, by myself.

It is imperative that you are proved positive for the unique Graves TSI ( a stimulating ) and or the TRab ( a blocking ) antibody blood test.

Hashimoto's and Graves, both auto immune thyroid diseases, start off the same way ;-

Whilst Graves is constant hyperactivity and managed with anti thyroid drugs, Hashimoto's hyperactivity is transient and managed, eventually, with T4 Levothyroxine.

Generally the NHS give around a 18 month window with AT drugs which will block your own production of thyroid hormones and your levels will slowly come down back into range and you'll become more comfortable and you dose of the AT drugs should be titrated down accordingly.

You should have regular T3 and T4 blood test monitoring and it will be in your best interests to keep copies of all your blood test results, and detail your level of wellness and any symptoms suffered at each dose adjustment. In this way when you see the endocrinologist you can give feedback and have some input, rather than just be a bunch of numbers on a computer screen to be juggled about and tweaked.

Your body clock has gone into overdrive and running fast :

There's a very good chance your metabolism has gone a bit haywire, so it will be prudent to get your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D checked out, as these need to be maintained at good high levels to support you through this phase of the disease.

You maybe nervous and on edge, you maybe having difficulty sleeping, eating everything but loosing weight, you may have dry gritty eyes, you may feel as though you have run a marathon and are totally exhausted but can't switch off and think you need to run it again.

The symptoms of hyper can be extreme and diverse. whilst others seem unrelated.

Be kind to yourself, switch off, if you can, by doing stuff you enjoy and try to relax, though fully understand this might all be going totally over your head.

There is a lot to read and understand and you will learn a lot simply by reading other posts on this amazing forum and from the Thyroid uk website, the charity who support this forum.

If you can maintain your levels of T3 and T4 in range, on the lowest level of AT drugs this has to be the best way forward. It might take longer than this NHS time frame, but personally, if I had my time again, and had to have Graves Disease, the option I would choose would be to be allowed to stay on the AT drugs and keep my thyroid.

Remember: Your thyroid is the victim in all this and not the cause - as the cause is your immune system attacking your body.

Zudukk
Zudukk in reply to pennyannie

Thanks for this.

Interesting as I had watched some YouTube videos of victims who were explaining that RAI made them better almost immediately, but thought it sounded too good to be true!

pennyannie
pennyannie in reply to Zudukk

Hey there,

I think it all depends how severe your Graves is, what you were, are, and then suffering with but if you can stay on the AT drugs you'll have kept all your options open, should you change your mind at a later date.

RAI is a slow burn and gradually destroys your thyroid in situ - so you then actually have a gland full of antibodies and RAI - where do they go once the gland is fully burnt out, disabled and shrivels up and dies ?

I think if your treatment in primary care after RAI is knowledgeable you may get the full thyroid hormone blood test for T3 and T4 but generally the NHS only monitor and test TSH levels but after RAI, your natural feedback loop is broken, and a TSH blood test, used in isolation a total waste of time, and if you do have Graves Disease it is known fact that the TSH blood test is totally unreliable because of the antibody interaction.

This is an auto immune disease that ultimately attacks the thyroid, and when it does, the symptoms expressed will take you to the doctor. The NHS will test the antibodies to confirm the medical diagnosis, but currently do not know how to control or reduce this component of the disease so tend to think that by destroying the gland attacked solves the problem.

Well it does stop you needing hospital appointments as then you'll be treated in primary care for hypothyroidism, and they presume they have a treatment for hypothyroidism - T4 Levothyroxine - so job done. ??

Looking at the very top of this post there are over 111, 400 + people registered on the Thyroid uk website looking for answers as to their continued symptoms - so the medical system isn't just failing me, but of course, you'll not be hearing from those other thousands of people who are getting on with their lives, unaware of this forum, or the possible problems they could have encountered.

You still have Graves, as it's an AI disease and as such, it's for life, as it's in your blood and DNA. I now manage lingering Graves, thyroid eye disease - caused by the RAI and hypothyroidism and was referred to as a conundrum by my doctor.

This sent me on my quest to find out what was wrong with me - only to find out I still had this disease as it doesn't go away, and all the RAI did for me was compound my issues, giving me different symptoms to live with and made me very unwell.

Mhymer
Mhymer in reply to pennyannie

Hi @pennyannie I have Graves to and wished I had heard of this website for agreeing to have RAI , I feel so tired all the time., and lots of other things.... I wanted to ask you if your blood type has anything to do with people with thyroid problems? I am rhesus negative and I’ve had to have anti D injections with all of my pregnancies , it might have nothing to do with it but I’ve always wondered.

pennyannie
pennyannie in reply to Mhymer

Hey there -

Well. I doubt it : I've never read that fact :

Graves is an auto immune disease and it's said that there is generally a genetic predisposition and that someone in your family maybe a generation away from you may have had an AI thyroid disease.

Graves can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one.

It is a poorly understood and badly treated AI disease, have you tried reading up on the Elaine Moore Graves Disease Foundation website ?

Do you have any current blood test results showing T3 and T4 levels ? If so start a new post of your own so to spread your question out to others who will also try to help you return to better health.

pennyannie
pennyannie in reply to Mhymer

Hey there - just read your posts as I remember writing to you - October just round the corner - good luck at your next appointment xx

Mhymer
Mhymer in reply to pennyannie

Thank you,🤞

Hi, I have graves disease, disgnosed sept 2018.The consultant put me on carbimazol first to try the titration method.However due to the problem getting hospital appointments I couldnt be seen frequently enough to get the level right and my levels kept going first too low, then too high.He then decided to try the block and replace method where I stayed on carbimazol the slowly introduced thyroxine.I have been on thus since Dec 2019.My levels have finally stabilized but now I have to stop all medication to see if I'm in remission.I do feel better and take my last tablets on Wednesday.I am a bit nervous.I have been given numerous blood forms and I have to have a blood test at the end of November to check things.I will ring the consultants Secretary to tell her I've had it done and she will pass the results to him to look at.If all's well I will repeat the process in February.He hopes to see me in person after that but I think that will be doubtful due to covid.I have plenty of blood forms anyway and have secretaries phone number if I need more.I've found this invaluable as due to demand you just can't get appointments regularly.He has said that if at any point my levels start to go up again he will just start me on the tablets again.I'm pleased about that as I can't have rai as I've got thyroid eye disease and I would argue against an operation as I've heard there can be problems with getting good treatment after that.Hopefully it won't come to that.Hope this helps.As you can see it's been a slow and steady process but I've got there in the end.Best wishes to you.

Thanks for this. It's really powerful to read about how others have navigated this awful condition.

May I ask, did you undertake on NHS or privately?

Good luck

Thankyou.Hope I can keep stress levels under control.My daughter is in process of buying her first home and moving out, plus we had to shield for three months due to my son having had hodgkins lymphoma n the past.It never rains but it pours.

I don't know personally what it is like to be hyperthyroid (I'm hypo). But I do know what it is like to be severely deficient in vitamins and minerals and I know this can happen to people who have any form of thyroid disease, no matter what treatment they are on.

I doubt that the NHS will test your nutrients, and even if they do the patient is told "anything in range is fine" applies to nutrients as well as everything else. But being in range isn't adequate for nutrients they need to be optimal. Many of the symptoms of thyroid disease mimic those of low vitamins and minerals, and low nutrients will make lots of symptoms of thyroid disease worse than they already are.

So, while you are being treated for your thyroid I would suggest that you test yourself occasionally for levels of vitamin B12, folate, vitamin D, ferritin (iron stores) and serum iron. If you do that you can create a new thread, post your results and reference ranges and ask for feedback. We can tell you what levels you should be aiming for, what dosage of supplements you might need to achieve optimal, and may be able to guide you on any maintenance dose once you've got your levels to optimal.

One of the issues with thyroid disease is that it can permanently damage the gut, and absorption of nutrients suffers as a result. You may have to become accustomed to taking a boatload of supplements for the rest of your life.

Thankyou I'll look into that.

I went to my GP and waited nearly 3 months for an appointment with an endocrinologist at my local hospital.All my treatment has been through the NHS and apart from the frustration of not being able to get appointments frequently enough I've been happy with everything.What I learned was to ask for a few blood forms when I saw the consultant and also ask for his secretaries phone number.Everytime he said I'll see you in 6 weeks I just knew it would be at least 12 weeks before I could get an appointment.I have my bloods done at my local GP s surgery and the consultant can see them on the system. I found it helpful to take a pen and paper when I went to appointments as quite often I forgot what had been said as soon as I got out.Terrible brain fog.Also forgot to say I was given proprananol by my gp to cope with symptoms whilst waiting for my first hospital appointment.Good luck with everything.

Hi sorry to hear you are suffering with hyper symptoms I too was diagnosed with Graves back in 2004 . Carbimaxole was prescribed which worked for my symptoms . As soon as carbimaxole was discontinued I became hyper again. Endo wanted to try Rai. I refused to have that and was maintained on low dose carbimaxole. I had eye problems also . I was taken off carbimaxole in 2015 . I made diet changes and quit smoking . Try to keep your stress levels down too. I am now free of all symptoms. My endo told me of I didn't have rai treatment I would be seeing him ad infinitum! I proved him wrong . do some research and listen to your body. Rai will destroy your thyroid so you will always have thyroid that then doesn't work. Hope this helps you . All the best .

SlowDragon
SlowDragonAdministrator

Strongly recommend getting FULL Thyroid and vitamin testing done while waiting to see any endocrinologist

We see many Hashimoto’s patients misdiagnosed as having Graves’ disease....Carbimazole is not correct treatment for Hashimoto’s...

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms

So if you haven’t had FULL testing...that’s first stop to definitely confirm cause is Graves’ disease

Both Hashimoto’s and Graves’ disease frequently lead to very low vitamin levels and improving vitamin levels can improve symptoms

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Graves Disease antibodies test

medichecks.com/products/tsh...

Zudukk
Zudukk in reply to SlowDragon

Thank you so much for this info and links.

Could I just advise and expect my endo clinician to perform these tests? Wouldn't it be part of their diagnostics in the consultation?

SlowDragon
SlowDragonAdministrator in reply to Zudukk

A) if NHS appointment it may be weeks /months

B) astonishing how often not all tests are done

You could wait and see what is tested

You’re legally entitled to copies of all test results

What’s been tested by GP so far?

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone 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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Zudukk
Zudukk in reply to SlowDragon

Hi there

Fortunately I have employer's private medical insurance which I've had for years but never used before.

I had a PM message from a community member recommending a Dr (name removed by admin) so I've booked in to see him next week.

Hope I've chosen we'll and he knows what tests to perform?

SlowDragon
SlowDragonAdministrator in reply to Zudukk

Please don’t name doctors on open forum when qualified with an opinion as to good (or bad)

Yes hopefully you may get all these tested

Obviously usually much cheaper to test first and take results with you to appointment

But you don’t have time to do that

And insurance is paying

Valarian
Valarian in reply to Zudukk

As you are hyper, you should get your thyroid levels - TSH, FT3 and FT4 - tested regularly on the NHS. Initially, tests are likely to be every 4-6 weeks, but as thyroid levels come within range and stabilise, they are likely to be less frequent. Unless they are sure that your hyperthyroidism isn’t due to Graves’, they should also test TSI or TRAb antibodies as early on in your treatment cycle as possible. The problem is, in many places this appears to be specialist order only, and as there are increasingly long waits to see endocrinologists, antibody tests may be delayed, but you shouldn’t have any problem if you have a private referral.

Getting a vitamin panel run on the NHS may be more of an issue., but you may have more success privately. Graves’ plays havoc with the digestive system, and given its effect on the metabolism, trying to optimise vitamin and mineral levels during the first eight weeks or so could be difficult anyway, as your thyroid levels are likely to change a lot over this period. Once your thyroid levels are within range, your medication will (probably) be reduced, the alteration in levels will slow down, and optimisation will be easier.

Re the referral - it’s worth posting separately for recommendations of private endos in your area. The admins will close your post so that people respond to you via private message.

My hyperthyroidism is caused by 2 nodules on my thyroid. It is therefore called a toxic multinodular goiter. This was diagnosed with an ultrasound and, to rule out cancer, a fine needle biopsy. The goiter is not visible to the naked eye. I have been managing for 3+ years taking Methimazole.

Yes, I take the beta blocker Metoprolol. I ignored my symptoms for years and ended up with CHF, A-fib, mitral valve regurgitation and severe osteoporosis. They really do push RAI and some people are happy with the results.

Graves is the most common cause of hyperthyroidism followed by nodules. There are a few other causes like adrenal malfunction or excess iodine. Your endocrinologist will figure it out.

Hi all - thanks for everyone's input thus far. I feel like learned so much in such a short space of time from everyone here. You all give me faith in humanity again.

Looking at Dionne's list of endos and can see there is a column for "what we've heard" and often it says things like "prescribed T3" etc. Are some clinicians hesitant to prescribe medications etc? Is this something I should be wary of?

pennyannie
pennyannie in reply to Zudukk

Hey there,

Many people on here have an Auto Immune thyroid disease -

With Graves if you go through the drastic action of either RAI thyroid ablation or surgery you will loose your thyroid and are totally reliant on thyroid hormone replacement.

If with Hashimoto's this disease slowly destroys your thyroid over a period of time and ultimately you too will be reliant on thyroid hormone replacement.

Currently, routinely the NHS only prescribe T4 thyroid hormone replacement :

A fully functioning working thyroid supports you daily with trace elements of T1. T2 and approximately 100 T4 + 10 T3 and calcitonin.

T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on :

Some people have trouble converting T4 into T3 :

T3 - synthetic Liothyronine is said to be about 3/4 times more powerful than T4 :

T3 was once prescribed by doctors, if T4 didn't work well for the patient :

Around 10 years ago T3 was relatively inexpensive - it still is in mainland Europe and other places around the world. The NHS has watched the price of T3 rise to some ridiculous amount, I think I read 6000% or was it 600% and so now it has been ruled that it is not to be prescribed in primary care.

You now will need a referral to see to an endo, and you may qualify for a trial of Liothyronine, depending more on the rules of the local CCG than actual need, and people who were prescribed T3 have been actively encouraged to swop back to T4 with some people simply having their prescriptions of Liothyronine stopped.

I failed in getting a trial of T3 in early 2018 because my TSH was suppressed - so I purchased it for myself and started my journey back to better health by myself and the support from this amazing forum.

I have since moved on to treat myself with Natural Desiccated Thyroid which is pig thyroid dried and ground down into tablets, and which contains all the same known thyroid hormones that my thyroid once supported me with, viz T1.T2.T3.T4 and calcitonin. NDT was the successful treatment for hypothyroidism for over 100 years prior to the introduction of blood tests and ranges and Levothyroxine.

Liothyronine, NDT and combination thyroid hormone medications which contain a fixed ratio of T3 and T4 are available in other countries of the world but here in the UK we seem to be stuck with little if any thyroid hormone replacement options other than T4.

Hi

I have been diagnosed Hyperthyroid since Feb 2019. I have 2 autonomous nodules producing excess thyroxine. I have been on Carbimazole since March 2019. I started at 20 mg a day now on 5mg 3 times a week.I am quite scared of RAI but know I may have to do it.

My Endo is letting me go 5 mg twice a week to see if I start going hyperactive again. 6 weekly blood test. If levels rise it will prove I need to do something about it,

Good wishes to you

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