2nd Hypo Test - TSH 3.72 (1st TSH 4.38) - Next ... - Thyroid UK

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2nd Hypo Test - TSH 3.72 (1st TSH 4.38) - Next Move???

john_83 profile image
16 Replies

Hi,

Just a little update on the results of a second test containing antibodies. Carried out by Medichecks (first test was Thriva)

Medichecks Feb 13th 2020

TSH 3.72 (0.27 - 4.2 R)

T3 5.27 (3.1 - 6.8 R)

FT4 17 (12 - 22 R)

Thyroglobulin Antibodies 15.4 (<115R)

Thyroid Peroxidase Antibodies 9 (<34R)

So on the basis of this second test, and according to Medichecks my TSH is still on the high side at 3.72 although down a little on the first test of 4.38, but still higher than normal. Kind of proves that something is amiss and it isn't a false test. Everything else however looks within range and very low on the Antibodies test, so that isn't looking like a problem.

Thriva (First Test approx 5 weeks before)

TSH 4.38 (0.27 - 4.2 R)

T3 5.30 (3.1 - 6.8 R)

FT4 17.70 (12.0 - 22.0 R)

Problem now is that i went to see my GP (as mentioned in the previous post), and unsurprisingly he was not interested. He said that anything under 10 is considered normal. From what is said on this forum and further reading i've done, it does seem this is an overlooked problem in the UK.

Could a TSH of this level be making me feel this unwell? since my last test i've had terrible brain fog, lethargy, and feeling spaced out - seems to be worse in the morning then gradually improving into the evening when i feel quite normal.

I found a few local Endocrinologists who i could see at the cost of around £180 for the consultation, then i can only imagine the extra cost of blood tests etc.

I'm inclined to order some Levothyroxine online through an online prescription and taking for 2 months to see the difference? I could retest myself to check levels. Is a private endocrinologist going to take me seriously at these levels of TSH? Also, when i enquired about the prices of seeing the endo privately, i asked the receptionist if he could then refer me to someone on the NHS if he thought it necessary to medicate (I'm thinking of the long term cost if this is going to be lifelong thing). She said that if i see someone privately, all prescriptions for medication (i may need) would be paid for privately forever? is this the case?

Any advice would be much appreciated. Amazing to have such helpful people to talk to about this when the professionals won't listen.

Thanks

John

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john_83 profile image
john_83

I also wanted to ask about the link between diet and Hypo, as I tend to feel even worse when i'm hungry or have missed a meal?

Thanks

John

SeasideSusie profile image
SeasideSusieRemembering

Could a TSH of this level be making me feel this unwell?

Yes. Some countries diagnose hypothyroidism when TSH reaches 3.

He said that anything under 10 is considered normal

I would be inclined to ask (but I can be an awkward so and so where doctors are concerned):

If your result is outside the reference range, surely this is abnormal?

In that case why is between top of range but under 10 considered normal?

What is the point of having a reference range if it is going to be ignored?

With hypERthyroidism, how far below range does the result have to go to get a diagnosis?

Does that have to go to 6 points below range like it has to go 6 points above range for hypothyroidism?

I found a few local Endocrinologists who i could see at the cost of around £180 for the consultation, then i can only imagine the extra cost of blood tests etc.

Is a private endocrinologist going to take me seriously at these levels of TSH?

Finding one that would diagnose with an in-range TSH would be virtually impossible, even privately.

She said that if i see someone privately, all prescriptions for medication (i may need) would be paid for privately forever? is this the case?

My ex-daughter-in-law was diagnosed and started on Levo privately. Eventually the GP saw a note on her discharge letter from hospital (after giving birth actually) which said "Thyroid results are acceptable for someone on Levothyroxine" and admitted "I suppose I'll have to accept the diagnosis now and prescribe your thyroxine on the NHS". So it's a case of getting someone in the NHS to say that your results are acceptable when taking Levo.

mandyjane profile image
mandyjane

Personally I take the TSH as a blood test with a pinch of salt. It is a rough guide. Your T3 and T4 are not too bad which begs the question what is going on? Maybe your thyroid is flagging and tSh raised to get you to a fairy decent T3 level, but as it is at a reasonable level why are you feeling ill. I wonder if something else is going on. For thyroid hormones to work effectively in your body you need good levels of ferritin, folate, b12 and Vit d. Your GP can test these. It also sounds like your blood sugar is dropping which might indicate adrenal issues. Dont pay to see an endo, they should be paying to see us. Make sure you eat small regular meals, avoid caffeine and refined sugar and supplement some selenium. Vit C and a little bit of sea salt in water every day might help but get your vits and mineral tested. I think one of those is out and your tsh is up a bit to compensate.

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Have you tried adding vitamin B12 or vitamin B complex

Recommend waiting and retesting in another 2 months

Your cholesterol is good. Often high if hypo

Your Ft4 and Ft3 are good

What’s your diet like?

Meat eater, vegetarian, junk food?

john_83 profile image
john_83 in reply to SlowDragon

Hi, my diet is really good i think. I don't eat meat, very little dairy and exercise 5 times a week. I regularly run 15k twice a week too.

SlowDragon profile image
SlowDragonAdministrator in reply to john_83

If you don’t eat meat do you supplement B12 everyday?

Low B12 symptoms

b12deficiency.info/signs-an...

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

john_83 profile image
john_83 in reply to SlowDragon

I do take them as a supplement yes, and I actually had my b12 tested. It was fine.

mistydog profile image
mistydog in reply to john_83

Fine isn't what we need, we need results (with ranges).

john_83 profile image
john_83

I'm fairly convinced that my symptoms are much worse in the morning, they are quite bad in the afternoon and then improve dramatically in the evening. I'm reading a lot about the symptoms of Hypo being linked to diet - specifically calorie intake. Maybe much more regular smaller meals would be beneficial as previously commented?

Many Thanks for all your comments, i really appreciated them

SlowDragon profile image
SlowDragonAdministrator in reply to john_83

Sounds like possible cortisol issue

thyroiduk.org/tuk/testing/r...

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

lillau1986 profile image
lillau1986

When did you have your bloods done? Was it in the morning? It can affect thyroid results a little but your TSH is definately in the high range. The GP wouldnt take mine seriously until it was sky high and then they panicked and started me on levo at 100mg a day.

From reading what you have put below maybe you are exercising too much and your adrenals are getting stressed and making you feel rubbish. Maybe try reducing your exercise and try yoga or pilates instead which will help with relaxation. Make sure you are taking Vitamin D3, K2 and B12 as they are important with thyroid function. Try to keep stress low as that really affects the thyroid.

john_83 profile image
john_83 in reply to lillau1986

My bloods have always been done by finger prick first thing in the morning at no later than 8am and before food. I do exercise a lot although I’ve actually been on holiday for the past three weeks without exercising and still feel absolutely dreadful, worse than ever actually. I’m looking into yoga also for flexibility and health reasons, so thank you for the advice. Again, much appreciated. Feels like a lifeline when people support each other, even when you get nothing from your gp.

john_83 profile image
john_83

I’ve today finally reached the end of my patience and decided to book a private consultation with an endocrinologist who specialises in Thyroid and adrenal issues. I’m due to see them on Friday evening. My GP who didn’t take me seriously is sending me for an ECG for Bradycardia (even though that in itself is a symptom of hypo), although he did agree to write me a referral to see someone privately and save me the cost of a private go too. I really hope I’ll be taken seriously as I must currently have over 75% of the possible symptoms of Hypo. Any tips for me on being taken seriously? My Tsh readings haven’t been sky high at 4.38 & late 3’s, but I genuinely feel absolutely terrible. I’m dreading a response of go away for a few months and we’ll test you again. I can’t currently concentrate, work and it’s putting some strain on my relationship with my girlfriend. I spent the day today in bed feeling awful.

mistydog profile image
mistydog in reply to john_83

Hi John

Seriously order some medichecks test and then come back here. Do the test as early as possible in the morning, and be consistent thereafter.

Don't give up, there is a lot of information and help here. Also, your GP only appears to be considering primary hypothyroidism (and frankly not dealing with that well), and there is secondary, central, loads of types. It's a good idea to get a referral but have the tests first.

john_83 profile image
john_83

A little update: so I went to my Private Endo app last night and the Dr was very good. Agreed that there’s a high chance that something is wrong in my Endo system, but didn’t jump on the thyroid. He seemed to be pointing much more at investigating my pituitary gland and wants me to have the flowing blood tests. He says I could go to my GP and “ask” with his recommendation that they check me for all, but he says it’s unlikely they will.

1) TFT

2) FSH

3) LH

4) Testosterone

5) Prolactin

6) Thyroid ABS

He said that those 6 are possibly available on the NHS, but it’s not guaranteed and I will def be waiting.

7) Short Synacthen Test - he said this one is def not available on the nhs and would have to be done privately. I’ve googled and seems pretty costly.

I’m considering finding somewhere online who can test the first 6 in one go as they are all fairly common. Any recommendations to keep the costs down would be appreciated.

Any advice on the 7th expensive test would be appreciated too.

I’m going to call Nuffield health on Monday on the Dr’s advice to see how much the first 6 will cost to have done there. Are they open to doing discounts on multiple blood tests like that, given that they will probably only take one blood sample?

Also, does anyone have any experience on what he may be suspecting for the first 6 tests? From what I can gather - he’s looking more at my Adrenals?

Thanks

John

Marz profile image
Marz in reply to john_83

Members won't see this update as it's too far down ! I would start a new post !

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