Confused completely : Hi, I’m new here and this... - Thyroid UK

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Confused completely

Hi, I’m new here and this is a bit of a stab in the dark but right now I’ll give anything a go to try and get some answers. I’m a 45 year old male.

Following a shoulder X-ray in April this year my gp stated that it looked like my thyroid gland was swollen but didn’t want to do anything right away....wanted to wait a few months then do bloods. About a month later I returned to gp with night sweats and was prescribed probantheline bromide (which until this week worked fine).

In July I started loosing my facial hair (was prescribed steroid cream which didn’t help), and at the beginning of September I started loosing the hair on my head, within 3 weeks I was and have remained bald.

I relocated and found a new gp practice, when I had my initial medical I explained about the hair loss and was told “you’re not getting enough sun” by one numpty! Anyway they ran bloods and although my tsh was low it was declared acceptable. I was prescribed Levothyroxine 25mcg all the same.

The symptoms I’d had (tiredness, coldness, aching joints, cramps, pins and needles, forgetting things, low esteem, lower libido) seemed to pick up after about 6 weeks on the meds...but that only lasted about 4 weeks before I was back to square one.

I’ve been on b12 injections for over a year now and them levels seem to be holding just fine these days.

My thyroid does feel swollen and now I’ve also got a significant swelling above my left collar bone...so in a few weeks I’m off for an ultrasound scan.

Basically I’m worried to hell because I’ve gone from thinking this is something straightforward to thinking the absolute worst. Do I have cancer...or some form of lymphoma. I’ve never looked so ill...and I don’t feel brilliant most days. My mood has hit rock bottom and it’s affecting my relationship big time.

Thanks for reading this.

15 Replies
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Hi,

Sorry to hear you are feeling so rubbish.

What you describe all al hypo symptoms. Also, hypo can go hand in hand with low vitamins and minerals, like B12, D, iron, and pretty much everything, as digestion can be impaired (low stomach acid, which results in diminished nutrient absorption; and there can also be reduced gut bacteria, etc...).

Do you have the printout of your results with the ranges? If you post these more experienced forum members will be able to comment in more detail.

Also, has your dose of Levo been increased? They started you on a very low dose, it should have been 50 mcg, take it for 6 weeks, test again and if necessary, increase by 25 mcg, and so on until your TSH is around 1 or lower, and your FT4 and FT3 on the upper part of the range and you feel better. Only not too many GPs are clued up about thyroid conditions.

You may be better off having a private test with Medichecks for example, as they include thyroid antibodies, Vit D, B12 and Ferritin. The NHS would hardly ever test all these. There are usually offers on Thursdays.

Good luck!

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Seems unusual to prescribe Levothyroxine with a LOW TSH

Sounds like vitamin D is low

B12 too

Both are often low with thyroid problems

It is possible to have a thyroid goitre that extends under the breast bone, known as a sub sternum goitre

Do you have any blood test results?

You are legally entitled to printed copies of your blood test results and ranges.

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.

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

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Hi Mark

Sorry you're having such a rubbish time. Do you know what your TSH was? Normally levothyroxine is prescribed for an underactive thyroid and this is picked up when the TSH is high. The symptoms you describe were certainly what I had When first diagnosed but my TSH was very high. Did they do any other thyroid tests like T4, T3 or antibodies? 25mcg is a very low dose of Levo, the fact that you felt better for a period of time certainly suggests Levo worked for you but now you need more. Normally you need a repeat blood test after starting Levo to see if you need a raise. Has the gp said this to you?

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I guess Mark meant his TSH was low as in, not yet the magic number 10 to merit treatment, but they decided to give him a trial of Levo anyway?

That happened to me too. It was 5.8 and I felt awful, I guess I'd been half dead if it had gone all the way to 10!

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Night sweats can be low B12. Has it improved since starting B12 injections?

25mcg Levothyroxine is only half the recommended starter dose of Levothyroxine

Bloods should be retested 6-8 weeks after each dose increase. Levothyroxine is increased slowly in 25mcg steps until FT4 is in top third of range and FT3 at least half way in range

Folate, ferritin, B12 and vitamin D must be optimal

As you are on B12 injections you may benefit from Supplementing a good quality daily vitamin B complex, one with folate in not folic acid.

B vitamins best taken in the morning after breakfast

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D and ferritin need testing

Vitamin D is almost always low. Supplementing to improve to around 80nmol

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markwsteele Rather than being a numpty, your GP could have been bang on the money when he said not enough sun! In fact, that he recognises the impact of low vitamins on health, is to be applauded. He was referring to vitamin D which stimulates hair follicles, so a deficiency may lead to hair loss. It's also linked to alopecia areata, an autoimmune condition that causes patchy hair loss. Beyond hair though, vitamin D deficiency has been shown to be associated with many autoimmune diseases, including rheumatoid arthritis, lupus, inflammatory bowel disease, MS, type 1 diabetes etc. That your symptoms returned a while after starting on 25 mcg Levothyroxine is absolutely to be expected, for two reasons: firstly unless you are elderly with cardiac problems, it was too low a start dose in any case, but more importantly, because of the negative feedback mechanisms that are in play between the thyroid, pituitary and hypothalamus, it was enough to interrupt your own endogenous production but not enough to make up the original deficit, nor the subsequent deficit which arose when the pituitary gland reduced its TSH output as a result. As advised, 6 weekly blood test, dose increase as required, and repeat, is the pattern until you are euthyroid.

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do you think the xray is to blame ?

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I think the X-ray picked something up but the fact my gp then decided to do nothing plus the fact I relocated didn’t help.

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I confess my mind raced through all sorts of ugly possibilities when I wasn't getting well on standard levothyroxine treatment. I started out feeling better, and then felt worse after a few weeks. The lab results were all regarded to indicate success. I managed to get the dose increased and felt better for a while and then worse again. Labs looked ok, nothing spectacular but well within desirable range. Various vitamins and things were tested, as recommended by the other postings. My various doctors and I started worrying it was some deadly tumor lurking somewhere in my brain or something else awful.

As it turned out, I, like a certain percentage of the world's population (large enough that the effects have been studied extensively and articles published in medical journals), have a genetic polymorphism that prevents me from converting levothyroxine to the T3 that the cells need. Instead, I produce reverse T3, a potent blocking hormone that is 100 times stronger than PTU, the drug administered to people with hyperthyroidism.

Oddly, the endocrinologist was unaware of the potency of rT3 and didn't care to test for it. When I got him to test it once, he only remarked that the results were "interesting." I had to pay for my own rT3 and FT3 testing periodically and study the behavior of my body as the endocrinologist kept increasing the levothyroxine dose, making me feel briefly better and then markedly worse.

You might be able to save yourself some pain and worry by getting FT3 and rT3 tested at the same draw.

I ultimately had 23andMe health and ancestry, looked through my raw DNA and found the polymorphisms that cause my antibodies to not show up on tests and that prevent conversion of T4 to T3.

So sorry you're having this experience.

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Actually, rT3 is not a 'potent' anything, and it doesn't block anything. It is what you might call a safety valve, that preserves energy in difficult times, and stops you going hyper, when you have excess T4. It is inert, and only stays in the body for a couple of hours, before being converted to T2. And, it has its own receptors, so doesn't block T3 receptors. However, if you have high rT3, it means there's a problem somewhere, and you have to do a lot of other testing to find out where.

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Actually, rT3 has been studied extensively and its action is well known and well understood. I offer below the links to a few of the many clinical studies discussing how it binds to cellular receptors that otherwise would be able to latch onto T3 and power the cells. And even if it is like some ephemeral pixie dust with a short effect, the body doesn't merely produce a bit of it now and then. It is produced continually through deiodination, and the cell receptors are being exposed continuously to fresh rT3 -- it can be measured in the plasma on any blood draw at any given moment. Having lived through the bombardment of high levels of rT3, I speak from experience and my plasma blood test results, rather than purely academic knowledge.

academic.oup.com/endo/artic...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/647...

ncbi.nlm.nih.gov/pubmed/849983

ncbi.nlm.nih.gov/pubmed/171141

ncbi.nlm.nih.gov/pubmed/932209

ncbi.nlm.nih.gov/pubmed/117...

ncbi.nlm.nih.gov/pmc/articl...

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1977, 1977 (you've given me this one twice), 1984, 1977, 1975, 1976, 2001. Yes, that's what used to be thought, that rT3 blocked T3 receptors. But, now they know that rT3 has its own receptors and doesn't block T3 receptors.

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When did your doctor tell you to go back for a retest? It should have been six weeks after starting the 25 mcg levo.

25 mcg is only half a normal starting dose. And, very often makes people feel worse, rather than better. That you started to feel better at all, is good, but it's perfectly normal that you then started to feel the symptoms come creeping back in again. It just means that you need an increase in dose, that's all.

The protocol should be to get retested six weeks after any increase in dose, and have an increase of 25 mcg if necessary - in the beginning, that will doubtless be necessary. And, you continue like that until all the symptoms are gone, and don't come back. Leaving a patient on a less than starter dose for over-six weeks, is negligent and unprofessional. If I were you, I would go straight back to the doctor and ask for a retest, followed by an increase in dose. And, don't be fobbed off. Too many doctors have no idea what they're doing when it comes to thyroid, and end up making their patients worse, rather than better. So, you have to stand your ground, I'm afraid.

When you go for your retest, make sure the blood draw is early in the morning - to get the highest TSH - and fast over-night. And, leave a 24 hour gap between your last dose of levo and the blood draw. Then, make sure you get a print-out of your results, and start keeping your own records. If you post your results on here, with the ranges, people will explain them to you. :)

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Hi and thanks for the replies. I’m waiting on doctors providing me a copy of my blood results so that I can update here and then someone might be able to make sense of what’s going on. What I do know is that my last blood test was for TSH and T4...but because my TSH was within limits (whatever they are) the lab refused to do the t4 test even though it was specifically requested. I wasn’t told to fast or not take my Levothyroxine in the morning but when I asked my gp if that would alter the results she said no!!! So I’m not having any more blood tests yet...but I’ve an ultrasound scan on my neck a week tomorrow.

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So after my last post a few weeks ago here’s an update, and yes I’m still confused! Yesterday I picked up a copy of my blood tests from the past 2 years and had an ultrasound scan on my neck. The scan showed my thyroid to be smaller than it should be not bigger (as I expected as I can feel a lump in my neck).

My blood results may as well be in Spanish for what I can understand...but thankfully I have google...which doesn’t exactly put it in English I can understand. So if anyone can decipher the next few paragraphs and give me something to work with for when I see my doctor next week I shall be very grateful.

This whole thyroid thing was picked up back in April last year, I had a blood test and the results were:

Thyroid peroxidase antibody level - 484.4

Erythrocyte sedimentation rate - 13 mm/h

My doctor at the time said he’d recheck in 12 weeks (I’ve relocated since) but within that time my body started playing up completely. I started with night sweats and was prescribed Propantheline Bromide. Now this isn’t for night sweats but the end result is no more night sweats.

In July a blood test showed:

Saturation Iron Binding Capacity - 12%

In July I discovered a bald patch in my beard which started off around the size of a 1p coin then rapidly grew and spread all over my face. I was prescribed steroid cream (which had no effect whatsoever).

I relocated in August, got a new doctor and had bloods done again.

Serum TSH level - 6.1

Serum Free T4 - 14.5

Reluctantly (!!) the doctor I saw for these results agreed to put my on Levothyroxine 25mcg. This was the same healthcare professional who suggested my hair loss was due to lack of sunlight.

At the beginning of September I started loosing significant amounts of head hair and within just over 3 weeks I was totally bald. As of today I have no head hair, very little facial hair, no eyelashes or eyebrows and a large bald patch on one lower leg.

I’ve had repeat bloods done in December because I asked for them. I’d been taking the Levothyroxine for about 6 weeks before my body started to feel better (not so lethargic, less aches and pains, memory improving, libido increased, general mood increased)...then after about a month I was back to square one.

The results (which I’ve just noticed are not on this print out) were that my TSH level was within range but even though my doctor had specifically asked for T4 level to be checked the lab refused as my TSH was normal! I was not told that the bloods should have been done first thing in the morning or not to take my medication beforehand...something I’ve learnt from some posts here.

So there we are...if anyone has any suggestions or ideas then I’d be grateful. I need all the help I can get!!!

Thank you.

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