Graves/hyperthyroid - not severe but wish me luck!

[BridlePath]

Greetings to fellow thyroid sufferers!

Weight loss of 1.5 stones since the start of the year sent me off to my GP surgery. After numerous tests the only thing that showed up was a thyroid problem. Tests were repeated a week later to confirm. Apart from the weight loss my symptoms are bowel movts 2-3 times daily (have been regular once a day for decades), occasional palpitations, (the past few days these have been when lying down at night), a very slight tremor in the hands and a general feeling of being disinclined to do much as my energy levels tend to fluctuate. I know I am not particularly badly affected compared to others who have much more severe and quite distressing symptoms. I have managed to keep my weight stable for the past month.

8 Aug

TSH <0.05 mIU/L (0.2 – 4.3)

FT4 27.8 pmol/L (7.8 – 18.0)

FT3 8.73 pmol/L (3.5 – 6.8)

14 Aug

TSH <0.05 mIU/L (0.2 – 4.3)

FT4 30.7 pmol/L (7.8 – 18.0)

FT3 10.22 pmol/L (3.5 – 6.8)

For completeness:

Serum ferritin 83 ng/ml (30.0 to 337.0)

Serum folate 16 ug/L (5.0 – 19.0)

GP said I needed to see specialist as treatment was “quite subtle” and wouldn’t prescribe until I had. Mentioned carbimazole, RAI etc. Didn’t tell me anything I didn’t already know from reading a few websites. I am fortunate to have access currently to private healthcare through my partner’s work scheme so was able to get an appointment with an endo quickly as I’d rung the Endocrinology dept at local hospital to be told four to five months wait.

Endo was nice man and was thorough in his examination though I believe his interest lies more in diabetes. Said Graves mainly based on the fact that I had increased blood flow through the thyroid gland, said my levels were not very high, prescribed Carbimazole 20mg and ordered blood test for TSH Receptor Antibodies to confirm diagnosis. Haven’t had the result yet. He also said I should have a bone density scan at some point but I really don’t believe I am at risk for osteoporosis as things currently stand. Had to go back to NHS GP for prescription as insurance doesn’t cover treatment for chronic illness but I will get a follow up with the consultant in December.

Now I am very much hoping that I will be in the 50ish% of people who achieve remission after a course of Carbimazole. I received a text from the GP surgery to advise that I should have blood tests TFT (TSH and FT4) and FBC every 6-8 weeks. Checking my record it says “Bloods to be repeated 6-8 weekly and the dose reduced to 10mg OD when free thyroid hormone levels are normal, then down to 5mg OD continuing for at least 6 months - follow up arranged 4 month”. From what I have read so far, the best chance of remission comes from continuing Carbimazole for at least 18 months so I do hope I won’t have a battle on my hands if it is decided to stop my prescription before then. And it is not clear at what point a 10mg dose should be reduced to a 5mg dose. The prescription is not yet ready to collect so in the meantime I have bought a TFT from Medichecks to do on Monday so I know what my starting point is.

Could forum members please educate me on what factors influence whether or not remission is likely after a course of carbimazole and what further reading I can do? Is there anything else I can do to persuade my body to behave itself? We eat a good balanced diet.

I have always enjoyed good health, I am a young 65 and it’s years since I have needed to see a doctor, apart from once about my annoying tinnitus. I am naturally averse to pill-taking. It is galling to develop a condition that seems to be the poor relation of the Endocrine world and medical practice in general. Thank goodness for this forum!

Sorry this is rather long!

[PurpleNails Administrator]

Welcome to forum.

I don’t think I can offer much extra advice because your teams plan & your understanding seem pretty on it.

Increased blood flow common with both Graves & Hashimoto’s so confirming diagnosis & watching levels as scheduled is the right thing to do.

Try not to stress about the what ifs… if you do get 18 months along & drs push for trial remission off medication or you were to relapse you can delay RAI & resume or stay on carbimazole. If you are well on it Drs can’t force you to stop it & undergo RAI.

Gluten issues common with thyroid autoimmune, you mention bowel issues so strong grounds to screen for coeliac. Test will detect allergy but not intolerance. So once test complete even if negative worth trialling strictly gluten free.

[BridlePath in reply to PurpleNails]

Thank you Purple Nails, interesting that increased blood flow is indicative of both conditions.

As for RAI, I am even more averse to radiation/radioactivity than I am to drugs so it would have to be a case of lesser of two evils (as in severe uncontrollable thyrotoxicosis) before I would even consider downing a toxic substance with a glass of water.

I did have a coeliac test as part of GP's investigations:

IgA anti-tTG Ab <0.50 U/mL (<15.0)

Gluten free something to bear in mind though I would sorely miss lovely sourdough bread from the farmer's market!

[SlowDragon Administrator]

you need vitamin D and B12 levels tested too

Tinnitus often linked to low B12

Also test TPO and TG antibodies for primarily autoimmune HYPOTHYROID Disease also called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

If TRab antibodies are negative, consider these could be hashimoto’s

Carbimazole is not correct treatment for Hashimoto’s

Definitely get coeliac blood test BEFORE trialing strictly gluten free diet

[BridlePath in reply to SlowDragon]

Thank you SlowDragon. I didn't know that about Tinnitus. I have now ordered a more advanced Thyroid Function Test from Medichecks which covers the vits and the TPO and TG antibodies.

Awaiting results of TRab test with interest.....

In no hurry to start taking Carbimazole, what's another couple of weeks and haven't heard from the pharmacy yet.

Coeliac test negative as in reply to PurpleNails above

[helvella]

You might want to get the 20 milligrams dispensed as four of 5 milligrams! Follow the link to see my explanation and a little more information.

helvella - Splitting Carbimazole Doses

A short discussion about Carbimazole primarily focussed on splitting doses but containing some other information.

Last updated 18/07/2024

helvella.blogspot.com/p/hel...

[BridlePath in reply to helvella]

Thank you Helvella. Noted, makes sense and even NHS website says dose is usually split into two or three. Prescription says once daily, may challenge this.

[HealthStarDust]

As I’ve recently discovered, TSH Receptor Antibodies are also present in Hashimoto disease too. Your levels don’t appear extremely high. They are very similar to mine during what is possibly a hashi swing.

Just an FYI to put on you radar.

[BridlePath in reply to HealthStarDust]

No, HealthStarDust, my levels are not that high, though they rose across a week. Be interesting to know where they sit now.

[greygoose in reply to BridlePath]

But that's exactly what they would do if you had Hashi's.

[greygoose]

Totally agree with HealthStarDust . Just testing TRAB wasn't sufficient. He should also have tested TSI, TPOab and TgAB.

TSI would have confirmed Graves' and TPO/Tg antibodies would have told you if is was more likely to be Hashimoto's Thyroiditis - aka Hashi's, aka Autoimmune Thyroid Disease.

I've never heard of anyone having 'not severe' Graves' - it usually turns out to be Hashi's. And your levels do look more like the 'hyper' phase of Hashi's than Graves'. So, carbi is the wrong treatment.

Antithyroid drugs like Carbimazoli stop the thyroid making more hormone. But they can't reduce the hormone that is already in the blood. If it is Hashi's, the blood levels will go down by themselves, so if you are taking Carbi and your thyroid isn't making hormone, you will go hypo pretty quickly. And that's not fun!

Unfortunately, doctors do not understand the difference between Hashi's and Graves' - or should I say the similarities. And a low TSH produces a knee-jerk reactiion where they start sceaming 'Graves'! Head for the hills!!!' and pump you full of carbi, without even bothering to do the necessary antibody tests.

As you said, the endo you saw was more than likely a diabetes specialist - they nearly all are. And diabetes specialists know no more about thyroid than GPs. But GPs have been trained to defer to them, for some unknown reason. So, be very, very careful. Get tested for Hashi's, and if it's positive and you do go hypo but this endo insists you continue with the the carbi, kick him to the curb and find someone else. We've seen it all on this forum!

Welcome to the forum.

[HealthStarDust in reply to greygoose]

I am not sure if the NHS in the UK do TSI test. TRABs seems to get quoted a lot.

[helvella in reply to HealthStarDust]

The NHS does do TSI. At least in some cases. I just searched for TSI within nhs.uk and found several - for example this one:

doclibrary-rcht.cornwall.nh...

Infants Born to Mothers with Thyroid Problems Neonatal Clinical Guideline V5.0

[HealthStarDust in reply to helvella]

Thank you. I’ve been seeing on btf pages that it isn’t usually carried out btf-thyroid.org/thyroid-ant...

And, I also could not find it on a few local NHS labs pathology pages.

[helvella in reply to HealthStarDust]

It would be so helpful if there were a comprehensive overview!

[HealthStarDust in reply to helvella]

Weirdly, I used the same search suggestion on the website and got nothing for TSI.

[Fruitandnutcase]

If you have got Graves or are hyper I would have the bone density scan. You don’t have to do anything about it but osteoporosis and Graves go hand in hand and it will give you an indication of what your bones are like and hopefully they will be fine and you can take action - with a bone friendly diet and lots of weight bearing exercise before you discover you have osteoporosis.

I wish my endo had been as enlightened as yours and mentioned the link between osteoporisis and Graves. Unfortunately none of the endos I saw thought to mention it and neither did any of the rheumatologists I saw when I developed inflammatory arthritis a couple of years later. Ten years on I managed to break both bones in my wrist and discovered I had osteoporosis.

So be glad your endo is on the ball and have that bone density scan. If you feel osteoporisis is unlikely the results will at least show you where you stand and like I said give you time to act. Like I said you don’t need to take the meds they offer you if you don’t want to but at least you will know where you stand.

[BridlePath in reply to Fruitandnutcase]

Thank you, Fruitandnutcase, I am sorry to hear about your painful experiences and it's shocking that no one picked up on your risk. I do believe my endo was being thorough in mentioning the osteoporosis risk, I just don't think thyroid is really his thing in general. As you say, no harm in getting the scan - though I am always reluctant to expose myself to radiation, the scan is low dose in radiation terms.

[Fruitandnutcase in reply to BridlePath]

Thank you. I think you are very lucky that your consultant is thinking along those lines. Ive come to accept it now but I used to feel so angry that none of the doctors I saw thought to mention conditions that had well known links to osteoporosis or even ask about my family history so I’d say your consultant is ahead of the pack.

The funny thing is that my best friend was treated for breast cancer at the same hospital years ago and she has had two DEXA scans since her treatment finished, so some departments take the osteoporosis risk more seriously than others.

[pennyannie]

Hello BridlePath and welcome to the forum :

There is more than 1 reason why your thyroid hormones have risen up and out of the ranges and why it is essential to run the thyroid antibodies to know which are over range and positive as then that's the medical evidence and on which the medication is prescribed, as not all thyroid diseases are medicated. and or treated, the same way.

Generally speaking we need the TPO - TgAB and or TSI - TRab results and ranges run - and it may also come back as a TSH Thyroid Receptor antibody reading with a single number and cut off number

Generally speaking Graves treatment takes precedence asthis AI disease is seen as life threatening if not medicated and the medication is an Anti Thyroid drug either Carbimazole or Propylthiouracil ( PTU ) :

Graves is a poorly understood and badly treated Auto Immune disease for which there is no cure and generally only gets diagnosed when the thyroid and or eyes are the targets of an immune system response - quite why now - is of course the 64 million $ question - which you are best placed to know the answer to - if there is one.

There is likely a genetic pre-disposition with Graves and can be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one - and though no 2 peoples journey with Graves the same - stress and anxiety are common triggers.

The NHS generally allocate a treatment window of 15-18 months with an Anti Thyroid drug and all this does is ' buy you time ' while we wait for your immune system response to calm back down again.

The AT drug should be titrated down at regular intervals in this treatment period as your T3 and T4 fall back down into range - with the longer term objective being that your thyroid resets itself without the need for any drugs and this phase of ill health just a ' blip ' :

We do now have some research you may like to keep :-

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

The most rounded of all I researched is that of Elaine Moore - books and website - elaine-moore.com

[BridlePath in reply to pennyannie]

Indeed, pennyannie, and unfortunately the endo has been a bit sparing with the blood tests. If it does turn out I have Graves the only trigger I can think of is having Covid for the third time in January - I can't think of anyone in my family who has had it, though. One thing is clear - I need more blood tests to arrive at an accurate diagnosis.

[pennyannie]

Apologies - I should have typed - there can be a genetic predisposition with someone in your family, maybe a generation away from you with a thyroid health issue - and not necessarily Graves.

Yes there are several articles on the internet detailing Graves post Covid and post vaccine.

[helvella]

Thread continued here:

Update to "Graves/hyperthyroid - not severe but wish me luck!"

healthunlocked.com/thyroidu...