Just diagnosed hyPERthyroid. Should I go private? Orthostatic hypotension?

[svenena]

Sorry in advance for long post

I had a thyroid check via Medichecks in Feb last year because I was feeling cold all the time and having problems with my memory. The thyroid results were normal (although I did have Tg antibodies, but I understand these are also common in healthy people), but I was deficient in Vit D and folate, and low in B12. I took supplements for about six months after that.

I went to my GP in Feb this year because I was getting lightheaded on standing up. BP measurements confirmed a significant drop from sitting to standing = orthostatic hypotension (OH). I was tested for anaemia and found to be iron deficient but not anaemic. I was prescribed iron supplements.

After three weeks, I was still having the OH and also started having palpitations, so I went back to the GP last week. This time my thyroid was tested, and the results shows I am hyperthyroid. Diabetes and coeliac tests were normal. I also had an ECG which was normal.

Other than the recent palpitations, I wasn't aware of any hyperthyroid symptoms (I still generally feel cold all the time rather than hot). However looking back at my Fitbit data over the past month, I can see that my average resting HR has increased, as has my HR whilst walking/cycling, and I have also lost 4-5lbs in the past 2-3 weeks, whereas I was previously maintaining for about three months (having gradually lost 3 stone last year, through diet and exercise). I've also been waking up earlier than I want to and being unable to get back to sleep. But I feel completely fine other than the OH and occasional palpitations.

The GP is referring me to an endo, which will apparently take months. In the meantime, she will ask them if I should be started on antithyroid medication. She offered me beta blockers, but I declined, as even during the palpitations my HR remains below 100, and I am worried it will make the OH worse. I am going to get my vitamins re-tested through Medichecks.

So my initial questions are:

1) Is it worth testing FT3? Will that give me any useful information?

2) TSH can obviously only go down to 0. How high can FT4 go? Does severity of symptoms correlate with the level?

3) Is it worth testing for TRAb to check for Graves? Or does my previous positive TgAB result already indicate that it is (likely? definitely?) autoimmune?

4) Is it worth seeing an endo privately, since I am going to have to wait months if not? If so, should I look for anything in particular when choosing one?

5) Related to the last qu, is there a value in treating hyperthyroidism sooner rather than later? It looks like this has been caught early in my case, since I only have minor symptoms and they only started recently. If this is important, then I'll look into the private option.

6) OH (my main symptom, which initially took me to the GP) doesn't appear to be a symptom of hyperthyroidism. My GP is going to check that with the endo team, but does anyone have any experience of this?

Any thoughts or experiences on any of the above would be really helpful. Thanks in advance.

[tattybogle]

Hashimoto's hypothyroidism often starts with a transient Hyper phase , but without the extremely high fT4/ fT3 levels of Graves disease .

Graves hyperthyroidism can have fT4 /3 several times the top of the reference range, (ie. fT4 in the 40/50 + range) whereas early hashimoto's has slightly elevated fT4 levels that look more like yours are at the moment.

An Endo can order a TRab (thyroid stimulating hormone Receptor antibodies ) which if raised would confirm Graves, and Graves sometimes also has TPOab /Tgab raised.

So you could have early graves or early hashimotos' (or indeed another cause of temporary raised thyroid hormone levels)

Until Graves is confirmed, if i was in your position I would be seeking further knowledge on the wisdom of taking antithyroid drugs if symptoms are not much of an issue.

As if it's early Hashimoto's fT4/3 will go down by themselves at some point, and i'd want to know if i really needed antithyroid's or not , or could just take something to relieve any troublesome symptoms until hormone levels went back down again by themselves.

[svenena in reply to tattybogle]

Thanks for this. I can get a TRab test from Medichecks, so I think I will do that in order to rule Graves either out or in.

I wasn't sure whether it was better to start treatment while my levels and symptoms aren't too bad (better in terms of more likely to return me to euthyroid). But obviously the medication can damage your liver, which I don't want either, so maybe it is better to wait and see what happens with my levels. Perhaps this is something a private endo could advise me on.

[humanbean]

Your results don't suggest hyperthyroidism to me. They suggest that you have Hashimoto's Thyroiditis. This condition often shows up with mildly hyperthyroid results but it is intermittent, and you could find yourself next week feeling dreadfully hypothyroid.

People with true hyperthyroidism usually have much, much higher Free T4 than your latest results show - often around 50+. But the result that really gives the game away is Free T3 - and you haven't got a recent result for that. In Feb 2020 your Free T3 was about 40% of the way through the range which is a perfectly healthy level for someone who isn't taking thyroid hormones (edit : and who doesn't have thyroid disease of any kind).

In untreated hypothyroidism Free T3 is low in range or under the range.

In untreated hyperthyroidism Free T3 is well above range.

Free T3 tells you far more accurately than TSH what is really going on with hypo/hyperthyroidism.

If I was in your shoes I would accept the beta blockers and would only take them when I felt my heart was going too fast. I definitely wouldn't take anti-thyroid drugs.

If you were to take anti-thyroid drugs with your current results your levels of thyroid hormone would most likely plummet into your boots within a week leaving you much worse off than you currently are.

With Hashi's each time you have a "hyper" episode (like the one you appear to be having now), your thyroid gets damaged and less able to produce thyroid hormones. Eventually the thyroid becomes so damaged that the patient becomes permanently hypothyroid.

I would suggest that you do what you can to optimise nutrient levels, and also adopt a 100% gluten-free diet. People with Hashi's often feel very much better if they give up gluten.

[svenena in reply to humanbean]

Thanks for this, it's encouraging to hear that it may not be 'proper' hyperthyroidism, although I'm not sure that hypo is any better! I am worried about potential cardiac impacts (either way), as I have a family history of this, so I will discuss the beta blockers with my GP.

I'll definitely get an FT3 test before starting on any anti-thyroid medication (I'm still waiting to hear whether or not this is going to be prescribed anyway).

I'll also read up on early Hashi's and intermittent hyperthyroidism as a sign of this.

[greygoose in reply to humanbean]

You took the words out of my mouse!

Totally agree. svenena , be careful. Doctors are far more ready to diagnose hyper than they are hypo! Just the sight of a low TSH can get them going. You do not want to take anti-thyroid drugs if you don't have Graves, it would be the wrong treatment.

I'm not sure that hypo is any better!

Actually, it is - IF correctly treated. The problem is, doctors aren't very clued up about how to treat it. Which is why we patients have to learn all about our disease and take charge.

I am worried about potential cardiac impacts (either way),

I don't think the present level of your FT4 is going to cause any problems for your heart. If your FT3 turns out to be very high, and stays that way, then yes, it could be a problem. But, if you have hashi's - which you very likely do - the levels aren't going to stay high enough for long enough to be a problem for your heart. However, the B Blockers may make you feel more comfortable.

[tromashka]

Hello, and thank you for the great questions. I'm not in position of answering them but am interested in answers too.My only input will be re: private Endo.

I was referred to a public endo and was told the waiting list was6-12 months ( I'm in Ireland), so i pushed for private appointment. I got seen 6 weeks later by a private Endo who didn't test for antibodies, presumed it was Graves just judging by my symptoms and high levels of T4 , prescribed carbimazole for next 4 months without any advice to retest bloods. What I know now, I should have researched what private endo I wanted to go to first before agreeing to the first available one. Paying 170euro was a waste and not much help. Other members mentioned there's a list of recommended endocrinologists that can be obtained from ThyroidUk admins.

Wishing you best of health.

Keep us posted. X

[pennyannie in reply to tromashka]

Hey there again Tromashka :

Do you have a diagnosis yet - or have I missed a post ?

[tromashka in reply to pennyannie]

Nope, nothing definite. Private endo just presumed it's Graves judging by elevated T4free and T3free + high vascularity of the thyroid shown by US. Might be a nodule too. Waiting for June to fly abroad and get examined properly there.

[svenena in reply to tromashka]

Thank you, I hope that you manage to resolve your thyroid issues too - keep us updated.

[pennyannie]

Hello Svenena

Having just had a quick look back a year or so, and I see you were clearly in a similar position then and a diagnosis of Hashimoto's auto immune disease offered.

All four essential vitamins and minerals are in red print , high lighting the need for some action to be taken, and there is probably some gut issues going on which again, is indicative of Hashimoto's Disease.

I don't have Hashimoto's - I'm with Graves, post RAI thyroid ablation. but read of people recommending reading Dr Isabella Wentz, as she has the disease and writes on the importance of healing and repairing the gut first so that you are first able to extract the vital nutrients from your food.

Your ferritin is improved and I aim for around 100 :

I aim for vitamin D at around 100 :

I aim for B12 active at 70 + serum B12 at 500 + and folate at around 20 :

Your TSH is suppressed and your T4 over range a little : which could be because you have experienced a " hyper " swing that is common with Hashimoto' s Disease:

These " hyper swings " are transient and your levels of T3 and T4 will " swing back " with your own thyroid hormone production a little more erratic and eventually you will need to make up the shortfall from your disabled gland by taking T4 - thyroid hormone replacement.

T3 is the most important number and sadly it wasn't read: It is T3 that gives you your symptoms - hyperthyroid and hypothyroid are the opposite ends of the same stick :

Too high a level of T3 and you have symptoms of hyperthyroidism and too low a level of T3 and you have the equally disabling symptoms of hypothyroidism - and yes, it's not that simply as some symptoms can be seen and experienced in both sets of symptoms.

With Graves the T3 and T4 keep rising to very high levels and once there is confirmation of Graves antibodies positive and over range you would need a prescription for AT drugs.

The antibodies unique to Graves Disease are a TSI ( sometimes referred to as a thyroid stimulating ) antibody and or a TR ab ( sometimes referred to as a thyroid blocking receptor) antibody.

What were your initial symptoms that took you to your doctor ?

[svenena in reply to pennyannie]

Thanks for taking the time to respond. I went to the GP because I feel lightheaded (like I'm going to faint) when I gor from sitting to standing. It turns out that this is because my blood pressure is dropping, but I don't yet know what is causing that (diabetes, coeliac and anaemia have been ruled out). It can be a symptom of underactive thyroid, but (for the moment at least) I am overactive, so I don't know what's going on there.

I'll get an FT3 test done via Medichecks.

[pennyannie in reply to svenena]

I think if you read up on the symptoms of Hashimoto's auto immune thyroid disease things may start to " click " and become a little clearer.

Thyroid uk who are the charity who support this amazing forum do have a very comprehensive website giving a lot more detail on all thyroid health issues.

Thyroid uk also hold a list of recommended " sympathetic endos and doctors " better versed at understanding and treating auto immune thyroid diseases.

[helvella Administrator Thyroid UK]

You ferritin is very odd:

Started at 36.8, down to 9.4 in five days! And up to 51 in just a month.

Those are very, very fast changes.

If ferritin level were reflecting iron levels, that rate of change would be difficult to believe. However, ferritin can and does also rise when we have inflammation.

In my book, you should have more extensive iron tests than just ferritin.

And being bottom of range for Active B12 is also something that needs more complete consideration. Have you taken any B12 supplements?

[svenena in reply to helvella]

Thanks for responding - the first ferritin test was actually last year, so it must have declined over a period of time. It's gone up over the past month because I've been taking prescribed supplements,

[helvella Administrator Thyroid UK in reply to svenena]

For some reason, I read that as five days apart! (We do sometimes see two tests in rapid succession.)

My point remains, that is a very fast rise. The usual problem with iron is that despite supplementing, the levels take a long time to rise.

[svenena in reply to helvella]

That's interesting. I couldn't find any info online about how quickly ferritin levels usually increase with supplementation. I'll be taking ferrous sulfate for a couple more months, anyway.

Regarding B12, my latest result was well within the range (although nearer the lower end), without supplementation. But that wasn't active B12, so I will get that retested, as I understand it's more accurate. I want to retest folate anyway, as I wasn't asked to fast before the most recent test.

[humanbean in reply to svenena]

I couldn't find any info online about how quickly ferritin levels usually increase with supplementation.

Doctors work on the assumption that most people can raise their ferritin levels with about 4 - 6 months of supplementation, but they don't very often test serum iron and they only really care about getting ferritin to a level of about 30 (irrespective of the range).

It took me roughly 21 months to raise my ferritin from 6% of the way through the range (with below range serum iron) to 42% of the way through the range (with low in range serum iron). During that entire time I was taking the maximum possible dose of ferrous fumarate 210mg.

[pennyannie in reply to helvella]

Thanks for mentioning this :

I thought this too but presumed some medical intervention responsible - and yes, I shouldn't have presumed and said something.

And you are right, as it took me over a year to build my ferritin up from 22 - to over 70 :

with my supplementing Gentle Iron, Spatone and eating liver twice a week.

[HighlandMo]

Hi Svenena. This really rang a bell with me because I was lucky to see Dr Peatfield many years ago before he retired and he checked my BP sitting and then standing. It did the same as yours and he immediately said “that’s your adrenals”. He double checked with an ankle reflex test. He always liked to treat the adrenals before the thyroid. He has a chapter in his book - Your Thyroid and how to keep it healthy. I’d recommend getting his book and reading up on how to treat low adrenal reserve.

[HighlandMo in reply to HighlandMo]

Hers a bit from his chapter on the adrenal thyroid connection.

.

[svenena in reply to HighlandMo]

Thanks for this. My GP asked the endo for advice, pending my referral, and they suggested that she test my cortisol levels in case of adrenal insufficiency, so I've got that booked in for next week (along with TSI and TPO antibody tests).