Newly diagnosed and hopped over from" Blood Can... - Thyroid UK

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Newly diagnosed and hopped over from" Blood Cancers"

MaggieSylvie profile image

Slow Dragon said three weeks ago "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 ." I am nearly 77 and I was tested mid-day, not fasted, as I was there for my regular blood cancer test and for one that my GP had requested. Two days later she phoned me and told me that I had an underactive thyroid. Big surprise. My TSH is 0.02 - very low but my T4 is not very low at 15.9 and, as I understand from my surfing, it should be much higher due to the low TSH. She didn't discuss any of my symptoms with me and hasn't seen me since well before Covid. I have lost weight (intentionally but not through drastic measures). Some of my symptoms suggest being overactive, and certainly some of the side effects of the meds she has prescribed are symptoms I already have. I think she was only basing her diagnosis on the low TSH and nothing else. Do you think there is anything about this scenario that makes sense?

58 Replies
SeasideSusie profile image
SeasideSusieAdministrator

MavgieSylvie

Two days later she phoned me and told me that I had an underactive thyroid. Big surprise. My TSH is 0.02....

I think she was only basing her diagnosis on the low TSH and nothing else.

If your GP said you have an underactive thyroid because your TSH is low then she hasn't got a clue. TSH has to be at least over range for a diagnosis of hypothyroidism. Primary hypothyroidism is only usually diagnosed when TSH is over 10.

Are you sure she didn't say overactive/HypERthyroid?

No, she said underactive, and I'm afraid she hasn't a clue about anything I'm going through. It frightens me that she has got it so wrong - unless the wrong word just slipped out. Anyway, she's prescribed Lexothyroxine. That's for hypo isn't it? She hasn't recommended I see an endocrinologist. So I am in her hands. It's just as well I'm being looked after by the Haematologist for my other illnesses. I am putting together a letter to her about my concerns, at the same time, not accusing her of anything, and I plan to deliver it to the surgery on Tuesday when I'm in the area. I had gleaned this information from surfing the web, but thank you for confirming that I haven't mis-read anything.

SeasideSusie profile image
SeasideSusieAdministrator in reply to MaggieSylvie

Yes, Levothyroxine is for underactive thyroid.

So if I continue to take it, what will happen (low dose)?

SeasideSusie profile image
SeasideSusieAdministrator in reply to MaggieSylvie

How much Levo are you taking and how long have you been taking it for?

First dose of 25 mg this morning 6.30.

SeasideSusie profile image
SeasideSusieAdministrator in reply to MaggieSylvie

OK, so to be honest I wouldn't take any more and speak to another doctor ASAP. No harm will have been done but with your TSH you are not hypOthyroid.

Thank you, SeasideSusie. I'm feeling very twitchy, and will take your advice. It's just the balance of the two hormones that is off and I was wondering if she actually knows more than I do!? I don't think so really, though she should.

She's a bit arrogant, saying she has had "loads of patients with MDS" when in a lifetime, a GP will only meet one or two. So difficult.

I think I can get round it by asking for a referral.

Someone who has an overactive thyroid (is hyperthyroid) who takes Levothyroxine will end up being and feeling more overactive.

But I'm not clear on what your diagnosis ought to be, if you need one at all :

1) When people are overactive/hyperthyroid their TSH becomes low and their Free T4 and Free T3 become high.

TSH has a circadian rhythm and is at its lowest early afternoon. See the graphs on this page :

healthunlocked.com/thyroidu...

If your TSH had been measured at 7am - 9am after fasting overnight your TSH may have been quite a bit higher. I can only assume that your TSH being 0.02 has spooked your doctor, and as well as being spooked she's got hypothyroid and hyperthyroid muddled up. It isn't possible (in a sane world) to diagnose any thyroid condition on just the TSH. But this isn't a sane world and doctors diagnose on the basis of TSH all the time. :(

2) TSH does vary according to age. See this thread :

healthunlocked.com/thyroidu...

...

Sorry, but I have to go and cook dinner. I hope you get more info from other members.

I was thinking the same SSusie! I thought that was probably why she has been incommunicado because she can't understand it herself!

Firstly it’s 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 & after any levo dose.

This will shows the highest TSH lowest FT4 in daily levels and may prevent dose reduction.

There may not be a huge variation but it’s best to test under consistent conditions so it’s not strictly essential just recommended. Something to bear in mind but not to worry about.

A TSH of 0.02 is very low. The TSH (Thyroid stimulating hormone) is a hormone from the pituitary which decreases when thyroid levels are high. (it’s telling the thyroid to reduce production)

You need to know what your actual thyroid hormones are. The FT4 (the free thyroxine) and FT3 (the free triiodothyronine).

A FT4 15.9 is probably mid range but we would need the lab range to accurately interpret. You also need a FT3 result but sadly NHS do not always include.

Could you get a copy of your results? Ask reception for a copy & don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist providing just say they are “for your records”. You are legally entitled to them.

Is this your first unusual thyroid result or have you had a diagnosis?

Are you currently taking levo? If so what dose & how long.

You said the doctor didn’t discuss symptoms with you, what was the plan?

Thanks for replying, PurpleNails. I do have a copy of my results online. This is my first unusual thyroid result - a sudden drop from a somewhat normal reading. There was no T3 included in the test - it wasn't requested. I get my results from the Patient Portal which I highly recommend to anyone having regular blood tests. FT4 was 15.9, with the range being 12-22 so within fairly normal range, but there seems to be something off, as I would expect it to be much higher when the TSH is so low. I took my first levo this morning at about 6.30. I take other meds as well, so timing is of the essence. I was only diagnosed on Wednesday over the phone. Most of my symptoms have been put down loosely to blood cancer, fibromyalgia and compression fractures.

I’m confused, Was it these results which promoted the doctor to start you levo? If so, this is extremely unusual.

Brilliant you have online access to your results, so you can monitor all your own results.

Doctors do tend to “freak” when the TSH is low. Even when FT4 & FT3 are in range they believe it means hyperthyroid even concluding they have Graves and try to put you on carbimazole.

FT4 of 15.9 [12 - 22] is 39% Through range. Neither hyper nor hypo so I don’t know why your doctor is telling you this shows Hypo and starting levo.

I really think a repeat test should have been done first and ideally thyroid antibodies tested.

There are 4 thyroid antibodies

Thyroid Peroxidase (TPO)

Thyroglobulin (Tg or TGab )

These are often tested first they confirm autoimmune issue and are present in autoimmune thyroiditis (Hashimotos) and in Graves.

Hashis can begin with transient hyper but then levels drop and you ultimately become hypo. Fluctuating levels means the TSH has to catch-up and It might explain the TSH is showing low while levels are in range.

If Graves is suspected then it can only be confirmed if either

Thyroid Stimulating Immunoglobulin (TSI)

TSH receptor antibodies (TRAb)

Are tested and are positive.

If your FT4 & FT3 levels did become continuously above range then carbimazole will be necessary.

If the levels become low replacement hormone will be required.

Have you ever had nutrients tested? When thyroid disfunction it’s common for folate, ferritin, B12 and vitamin D to be affected, which can both mimic and compound symptoms.

Again if you have any results, thyroid or otherwise, please include the lab reference range.

Thanks, PurpleNails. I'm going to copy your reply and file it in my GP file. I have MDS/MPN and have blood tests done every three or four months normally. My B12 is high and I am taking calcium/Vit D for my compression fractures. I believe most of my bloods, ferritin, folate etc are normal (it's just hemoglobin and platelets that are problematic). Tests have recently been done on my parathyroid but nothing showed up so far as I am aware. The recent TSH level was low but normal but this week it showed up to have dropped dramatically. FT3 has never to my knowledge been tested. Thyroid antibodies have not been tested because it has never arisen. My GP has already shown her ignorance about MDS/MPN and I think she is trying to jump in before my haematologist does. Knee-jerk reaction before doing her research. It's early days, so I will deliver my letter and hope they do some more tests, as you suggest. Thank you so much for helping me this evening.

SlowDragon profile image
SlowDragonAdministrator

There are two main autoimmune thyroid diseases

Graves’ disease- autoimmune hyperthyroidism

Diagnosed by testing TSI or Trab antibodies

Graves’ disease blood test results would typically be

Very low TSH - 0.02 or similar

Very high Ft4- always over top of range. Often very high and over range

High/over range FT3

Hashimoto’s - autoimmune hypothyroid

Diagnosed by testing TPO and/or TG thyroid antibodies

Hashimoto’s frequently starts with transient hyperthyroid symptoms and test results….,. Before becoming increasingly hypothyroid

You need folate, ferritin, vitamin D and B12 results and ranges

Hi MaggieSylvie

I thought it maybe helpful to mention that (sorry if this doesn’t apply but you did say about MPN) do you take hydroxycarbamide by any chance? Only because a while ago I read that this can effect thyroid. I think it’s generally thought to induce hyperthyroidism in some people. It maybe worth asking the question on the healthunlocked MPN forum. You may already be a member?

Not that your results say that you have an issue but knowledge is power and all that.

Wishing you the very best of luck x.

jodary profile image
jodary in reply to Yeswithasmile

Hi, I am finding this very interesting because I also have a MPN ( ET) Which is overproduction of platelets. I take hydroxycarbomide and have been having issues with my thyroid levels . I tried to discuss with my haematologist but she flatly refuses to discuss and says thyroid is nothing to do with her and see my GP. My last appointment there on Friday I refused to increase my dose of hydroxycarbomide as I still am trialling an increase in thyroxine which I insisted on and GP reluctantly agreed to probably to shut me up. I am convinced the hydroxycarbomide has affected my thyroid but they won't listen. After Friday's consultation it became very frosty, just hope your haematologist is more willing to listen.

Yeswithasmile profile image
Yeswithasmile in reply to jodary

Jodary, I’m sorry to read that you have MPN specifically ET.

This is just one paper that shows it’s has an effect. I did find that the research is generally on CML patients rather than ET but the treatment is still hydroxycarbamide.

researchgate.net/publicatio...

It’s actually my mum that has it and she has had several episodes now. It took them a while to acknowledge it may be an issue though so I’m not surprised of the reaction you had. It took some fighting for them to correctly test and by then it had all calmed down.

Good luck x.

jodary profile image
jodary in reply to Yeswithasmile

Well thank you for that. I have had the opposite effect in that my tsh had climbed and my T4 decreased quite a lot, with low T3. I came away from the haematologist on Friday in tears after the way I was spoken to. Just don't come here talking about your thyroid its nothing to do with me. I am waiting to see if the increase in thyroxine will have any impact on my platelets. I had this idea that lack of T3 affects every cell in your body so why not your bone marrow. . Meanwhile I will gather evidence like this to take with me next time x

Yeswithasmile profile image
Yeswithasmile in reply to jodary

That’s dreadful Jodary. You feel vunerable and your issue is complex and you deserve better from your haematologist. It’s so sad that this is a story we here all too often about the people we are supposed to put our faith into. We may be just a nhs number to them but a lot of them need to be retrained to treat us as the actual human beings we are.

I think it is possible for thyroid disorders to create anomalies in the blood. That’s why you see a lot of untreated on statins for one example. Also my platelets have reached 510 but gp refused to refer me to haematology. They have always been over range but have dipped about. It’s been going on 20 years. I will be interested once optimal, to see what they are then.

I wish you the courage to put your point across next time and the strength to deal with the answer as I feel you should really ask to see someone who is more open minded and without a superiority complex. I have to say I think this is a big ask!

jodary profile image
jodary in reply to Yeswithasmile

Thank you for your support. I also had raised platelets for a good few years before my gp agreed to refer me. They were in the 700s then. I frequently asked but just kept getting told they would retest them in 3 months I suppose hoping they would go down on their own. I did ask on MPN forum and they were quite a few people with both conditions. The question is what causes what, I was told if I went on interfon they would monitor my thyroid but they flatly refuse to consider any connection with hydroxycarbomide. I have mentioned that if I don't feel any better after the increase in thyroxine which I practically demanded then I might stop the hydroxycarbomide. So the key visit will be in January when the increase should have taken any effect if its going to.

MaggieSylvie profile image
MaggieSylvie in reply to jodary

It's all down to us to educate our doctors. Why are they so resistant to sending us for tests? They might, however, go down on their own. I bet you can't wait for January.

Hi again, don't worry about your platelets being over 500. Mine are frequently above that (600) and my haem just shrugs it off. I think symptoms are probably of more importance. Platelets can apparently go up or down by about 100 in as little of a day and 500 is not far out of range, so don't panic.

Ah thank you. That was kind. I used to be concerned but that was when I first saw them raised. Last test they weren’t much over and I’ve survived this far! Although my mum getting diagnosed with ET and the jak2 makes me wonder? But it does beg the question about the thyroid connection when you look backwards at family issues. 🤷‍♀️

Thanks for your kind reply 😊

You know, don't you that MPNs are not usually hereditary. It is the JAK2 gene mutation that causes the MPN, although in my case they haven't found any gene mutations so I'm classed as triple negative. Heaven knows why I have MDS as well, but it's a "crossover" condition, so there's probably a lot more to it. The number of people on this forum who have both MPNs and thyroid disorders might point to there being a connection; it's a pity that both conditions are so rare that doctors don't pick up on it.

It does seem you have been very unfortunate there. I’m sorry.

As for it all not being hereditary I realise they say jak2 is acquired rather than passed on but they do have studies of familial links.

I really am not concerned that I will develop it. I’m more concerned with getting my thyroid medication balanced to help me feel better atm so I honestly do sympathise with all of you that are dealing with multiple issues. It must be very frustrating and confusing to say the least! Wishing you all the wellness there is! x

Honestly, Yeswithasmile, I don't think my MDS/MPN bothers me too much; it was just after being diagnosed I was a bit traumatised by the news, but since then, like you, I have had other things to cope with that impact my life much more and that need not have happened. If I had been younger when diagnosed I might be more worried about progression but it is unlikely that I have enough years left for that to happen. I think familial links are very rare in what is already a rare condition, and with it affecting the elderly more than the young, familial links would be hard to find in a generation that has already passed away. I suspect there is nothing wrong with my thyroid, though I would not be surprised if the pituitary was at fault somewhere along the line. I have welcomed all the help I have received from you and others on this forum but I have spent yesterday evening and all day today on it (when I have to get egg out of a pair of trousers (my partner sat on an egg) and a meal to prepare) - all because of a stupid doctor! Wishing you all the wellness there is, too.

Ah age is but a number MaggieSlyvie! Whilst I admire your attitude about progression we must continue to ensure that only the best treatment is available and utilised for longevity.

I very much hope there is nothing wrong with your thyroid amd you know you can come back here at any point and ask any questions. There are some very clever bods as you know.

Last word is many, many doctors are stupid. We all have our experiences of the incompetent I know. You can read on here on a daily basis. I’m just sorry that you also have to endure the egotistical type. Unfortunately there doesn’t appear to be a remedy for it.

Good luck getting the egg out!!

Oooh, I have prepared the meal. My back won't stand up to any more standing, so the trousers will have to wait. At least there will be minimal washing up. The trousers have been soaked in cold water for days since it happened and I don't think it will take much to get the egg out as it seems only to be the white.

Having been a member since 2018, I do come on this site on a daily basis; I have so many friends and advisers here and I am so grateful for all the clever bods who have helped me, sometimes within seconds of my posting. Honestly, they are the only ones who can help me, especially with doctors like mine! And it's a two-way thing, of course. I always save the messages until I have read all my other emails because there is always something interesting, or someone I can help.

Yes, when I told my idiot GP I had MDS/MPN and thought it was time to have a breast scan as I didn't want to be diagnosed with blood cancer only to die of breast cancer, she said something like "Oh - you haven't got cancer; I've known LOADS of patients with MDS." What is it - two in a million people have it? and there are many varieties. I just would have thought she'd have discovered her mistake and taken extra precautions this time. She's a specialist in diabetes so my partner (Type 1) is well looked after so long as the admin staff don't alter the meaning of any messages we leave (another story). She was useless when I had terrible arthritis pain. Said she would come out and didn't - screamed at me that I "WAS HAVING A FLAIR" - flair less than six months after diagnosis at A & E. I'm not saying she's unpleasant, but all crocodiles have a smile on their face.

Honestly. You couldn’t make it up could you?! So rude and flippant. Where else would you be able to talk to people like that and get away with it? Yet they seem to all the time. I shake my head. (Wish there was an emoji for that) (mind you is probably wear it out!)

Well at least you are able to research. We have the internet now and this amazing forum and other resources too. You obviously enjoy it. I know I do. I don’t think I really help people like you do but I try to interact rather than just suck it all up without giving anything back. But I am so glad it’s here and I have learned so much so far and am hoping everyday will continue to be a school day!

Here’s to wishing the medical profession become more amenable at the very least 🤞🏻

Look after yourself MaggieSylvie x.

Thanks, yeswithasmile. I second all that you say. You do help, and I'm so glad that you are here. It will be very interesting to see how my GP responds to my letter🤫

I am at low risk for leukhaemia so only on aspirin and Watch and Wait. I do want longevity, but I'm not much of a believer in chemical remedies; I want to preserve my kidneys and liver as well as I can.

MaggieSylvie profile image
MaggieSylvie in reply to jodary

Jodary, I just Googled the question you are asking and got this result: This study conclude that use of hydroxyurea for treatment of CML patients results in elevation of thyroid hormones concentration.

It is from ORIGINAL ARTICLE P J M H S Vol. 13, NO. 3, JUL – SEP 2019 792

Impact of Hydroxyurea Treatment on Thyroid Function Profile Among Chronic Myeloid Leukemia Patients in Khartoum Nuclear and Radiology Hospital

AYMAN ALI MOHAMMED ALAMEEN1, ... I'm not sure that is the answer you wanted.

jodary profile image
jodary in reply to MaggieSylvie

It proves there is some link between them but it was my Tsh increasing because my T4 was dropping and my T3 was only just in the low end of the range. So I didn't get an elevation of thyroid hormones but the opposite. I havd come across quite a few people with both conditions on the MPN forum . Quite what the link is I'm not sure. It's certainly not straight forward. I was beginning to feel quite unwell with hypothyroid symptons and I do think I'm starting to feel better after 3 months on the new dose. But then when you are on a drug like hydroxycarbomide it can have side effects as well. And then the situation becomes too complicated to manage on your own.

MaggieSylvie profile image
MaggieSylvie in reply to jodary

I'm sorry to hear about your complications, jodary. I hope you have a good medic who looks after you and is on your side.

jodary profile image
jodary in reply to MaggieSylvie

No unfortunately as I said noone wants to know. Its going to be down to me to try and research and ultimately make the decision not to take the hydroxycarbomide. As its this that I think is causing the issues. I felt fine before I started taking it no symptoms from the ET.

MaggieSylvie profile image
MaggieSylvie in reply to jodary

So why were you prescribed it? Symptoms are more important than blood counts, aren't they? I've just read some advice to speak to your specialist nurse. They are the ones who have the knowledge I think.

jodary profile image
jodary in reply to MaggieSylvie

My platelets were pretty stable for years in the 800s then after I turned 60 they took a leap up to 1000. I was put under pressure to take hydroxycarbomide to lower them because increased platelets apparently put you at increased risk of a stroke or blood clot. They are still in the 600s and they still want me to increase the dose I am currently on. I have never had symptons but since my thyroid levels have started fluctuating I have felt increasingly unwell. And haemotology don't want to know about thyroid and GPS don't like doing anything now I have a serious chronic condition. And say I don't feel well because of ET . SO I'm stuck.

MaggieSylvie profile image
MaggieSylvie in reply to jodary

I wonder if there is an alternative to hydroxy. I take aspirin as a precaution, but presumably you would need a dose that wouldn't do you much good in other ways. I feel for you. You really need someone on your side. I wonder if PALS could help, as it seems you are not being listened to.

jodary profile image
jodary in reply to MaggieSylvie

I also take aspirin. I'm not sure I have cause for an actual complaint via PALS. Haematologist just doesn't believe there's a connection. They just want my platelets back in range .

MaggieSylvie profile image
MaggieSylvie in reply to jodary

I think PALS still might be able to help, whether you put it to them as a complaint or an enquiry. At my hospital they are very helpful (I email them). Whether there's a connection or not, you need the best care they can give.

Good morning Yeswithasmile, No, I take only aspirin for my MPN, and yes, I am a member of that site. Thanks for your thought. Conversely, I wonder if my thyroid is behind the MDS/MPN.

jodary profile image
jodary in reply to MaggieSylvie

I also wonder if thyroid is behind my MPN. I have taken levo for 35 years and been diagnosed with MPN ET for 10 years only on aspirin until 2 years ago when platelets leapt to over 1 million. I have been taking hydroxycarbomide forc2 years and platelets are consistent in 600s. But that's when my thyroid issues increased with tsh rising and t4 dropping and low T3 only just in range. It doesn't matter what my results are they just say they are fine as in range. Noone wants to take control of it , GP says my issues are to do with MPN and I should talk to haematologist. They say thyroid is GPS responsibility so talk to them. So I have to take control myself and if it means stopping hydroxycarbomide then I will. I am convinced that thyroid plays a part and there's a need to get it optimally treated to see where we are then.

MaggieSylvie profile image
MaggieSylvie in reply to jodary

I think our bodies are delicately balanced. I am 77 at Christmas and was diagnosed with MDS/MPN in June 2018. So I have ET with raised platelets and the MDS is an insufficiency of healthy haemoglobin cells. I have yet to prove that if one goes up the other goes down, but that clearly seems to be the case with TSH and T4. It's mostly down to hormones, I think. We need an endocrinologist to take a proper interest in us; then we might get somewhere. If this matter doesn't resolve itself, I shall tell my haematologist about it; she may not feel it is in her remit but I don't think she will dismiss it out of hand as she never has done with my other issues. It just takes someone with a bit of curiosity - at least as much curiosity as we the patients display. I couldn't find your long post that you said was "lower down". By the way, I am only on aspirin for MPN. Last night I found out that a drop in TSH can be caused by trauma, stress, etc. so I suspect, given my rollercoaster life, this is what caused it. I suspect I am actually neither hypo nor hyper.

Sorry Maggie Sylvie, I have written quite a long reply to you but have put it further down the post by mistake. Could you have a look and see what you think.

Your blood results are not hypothyroid and I wouldn't touch Levothyroxine on the basis of them. Your TSH is low, but it could be a one-off. Or it could be something wrong with your pituitary gland.

If you can afford it, it would be good to get a private finger prick blood test from Medichecks (Thursday they have offers and if you look on the Thyroid UK web site there's a discount code available too). You need the test the looks at TSH, FT3, FT4, both thyroid antibodies and the associated factors. Do that test first thing, before 8am, nothing to eat, no meds until afterwards etc. But do drink water about an half hour before to ensure you are not dehydrated or the blood doesn't flow well.

That test will give you a) a second look at the situation and b) much more information that is useful.

Your GP really is clueless if she things a low TSH means hypothyroidism and prescribes Levo. I mean, we see reports of lots of useless GPs here, but this one is in a league of her own. Can you see someone else at the practice? Can you shift practices?

in case it help with letter to the Doctor here's the NICE guidelines for diagnosing and treating thyroid disease.

nice.org.uk/guidance/ng145/...

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment.

nice.org.uk/guidance/ng145/...

1.8 Managing and monitoring subclinical hyperthyroidism

Treating subclinical hyperthyroidism

1.8.1Consider seeking specialist advice on managing subclinical hyperthyroidism in adults if they have:

2 TSH readings lower than 0.1 Miu/litre at least 3 months apart and

evidence of thyroid disease (for example, a goitre or positive thyroid antibodies) or symptoms of thyrotoxicosis.

1.8.2Consider seeking specialist advice on managing subclinical hyperthyroidism in all children and young people.

Untreated subclinical hyperthyroidism

1.8.3Consider measuring TSH every 6 months for adults with untreated subclinical hyperthyroidism. If the TSH level is outside the reference range, consider measuring FT4 and FT3 in the same sample.

1.8.4Consider measuring TSH, FT4 and FT3 every 3 months for children and young people with untreated subclinical hyperthyroidism.

1.8.5Consider stopping TSH measurement for adults, children and young people with untreated subclinical hyperthyroidism if the TSH level stabilises (2 similar measurements within the reference range 3 to 6 months apart).

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So ... Unless she knows something we don't , your GP seems to be confused.

If you 'd had a TSH that was slightly ABOVE range, but fT4 was still within range, then (following a 2nd blood test after 3 months to confirm) you might have been diagnosed with 'Subclinical Hypothyroid' and could at GP's discretion be started on Levo even though fT4 was still in range.

So even if you did have subclinical hypothyroidism (which you don't, because your TSH is low , not high ) a repeat blood test should have been done to confirm the raised TSH wasn't just a one off, BEFORE starting Levo.

As you had a LOW TSH, but fT4 still in range , then that would be classed as 'Subclinical HYPERthyroid' which would still need to be confirmed by a repeat blood test , and it certainly would not be treated with Levothyroxine, as Levothyoxine would lower the TSH further .

Hi maggieSylvie❤️

I'm going to ask this... Did they do your T3... I bet not... As many on here will tell you T3 is the best along with T4 to see how your thyroid is performing.. Obviously as seasidesusie said your TSH dose not show hypo it shows hyper.. My TSH was 0.02 and it said on my bloodwork hyperthyroid, my T3 was 24.2 no T4 was done.. So as seasidesusie says I to don't think you should be taking levo as its for underactive thyroid, are you feeling hyper? I myself had palpitations (fast heartbeat) I sweated a lot had gut problems and bad insomnia and felt exhausted, obviously your gp has either said the wrong word.. Hyper.. Hypo.. But if you have been given levo by your gp she/he must think its hypo.. 🤷‍♀️

MaggieSylvie profile image
MaggieSylvie in reply to birkie

No, they did not test T3 and I have most of the same symptoms as you. She said my TSH was low on the previous test and the sudden plummet was the trigger for action. I don't believe she said the wrong word because of the prescription, which I only took one of before stopping. She clearly thinks low TSH equals underactive thyroid. I've told her my symptoms don't match and she should have asked me about them when she phoned me. Very unprofessional of her to have so much faith in herself that she didn't even refer to the NICE guidelines.

birkie profile image
birkie in reply to MaggieSylvie

Hi maggieSylvie❤️Unfortunately as my of us on here know GPS and even endocrinologist don't really know much about thyroid function, that's really sad as many of us either don't get diagnosed or get the wrong diagnosis, I fought my gp for over a year, I knew something was wrong and it was not the menupause as he kept saying 😠 unfortunately my gp left me without a diagnosis for to long I had graves (overactive thyroid) and by the time I got my diagnosis (not by my normal gp I must add, by a young lady gp who had just join our practice 👍) my thyroid couldn't be saved as it was so toxic I had it removed in 2019, I blame my gp for this, and are gathering all my blood work from 2017 when I started to feel ill up to my diagnosis in sep 2018..i think the gp and surgery should explain how they got my diagnosis wrong, like your gp is getting your diagnosis wrong we must stand up to this has it can have a detrimental affect on our health, best of luck.. ❤️❤️

MaggieSylvie profile image
MaggieSylvie in reply to birkie

That is a terrible outcome, firstly if GPs and endos don't know much about thyroid function and secondly that you were fobbed off for so long by a doctor who just couldn't be bothered to look beyond his own nose ie menopause. At least my menopause is long in the past so they can't blame that - not that I've complained of anything other than an extremely noisy heartbeat. And that was what lead to the diagnosis of my blood cancer overlap syndrome. Not my normal GP - another in the practice, who sadly, has just retired.

My GP does, however, keep mentioning depression, which I don't have. I hope you are suing your practice, as removing the thyroid must definitely lead to life-long medication at the very least. I am not suing because I have saved the day myself. Ironic.

Oooh, thank you, tattybogle. I am horrified at the speed at which this has happened and have put in the letter that I am asking for tests to cover the various aspects of this that have not been done. I'm thinking this in itself will be enough to upset the applecart. After all, I have no medical background other than what life and reading has provided me with. I will certainly copy your post and keep it in case I need back up! Perhaps I will just send her a reference to the NICE guidance as I have already gone to two pages.

it's rather concerning if she has got it this wrong .. we see plenty of garbage from GP's /Endo's on here , but i think you might be the first to get prescribed Levo for (allegedly) being underactive, when your blood clearly indicates 'subclinical hyper' .... and i think the usual response to that is 'wait and see' or prescribe a beta blocker to reduce heart symptoms if there are any.

If you think your letter is getting too long , just send her a postcard saying "please explain yourself, you prescription is illogical" :)

Actually, my letter has the MPN letter attached, with advice on the booster and third Covid injections. Also my GP said she would arrange an MRI to look at my bladder (I actually thought that was what the blood tests were for) but more than six weeks have gone by and no appointment received, so I've had to mention that and my lack of sleep, so while the length of the letter is mostly about the latest diagnosis not all of it is. I can't bear to talk to the arrogant shrew.

Your doctor isn't the first one to get confused that we have heard about on the forum. There have been a few occasions when people on Levo have had a blood test showing their TSH has risen and they get their Levo dose reduced.

And I'm sure I read a post a few years ago in which someone untreated for thyroid disease of any kind had a very high TSH and was referred to an endo because the GP thought they were severely hyperthyroid.

It doesn't say much for the medical profession, does it? We have to look after ourselves, and they can't blame us for visiting Dr Google when they so often get it wrong. I always want to know all the ins and outs when I'm diagnosed with anything but it's time-consuming and it's something GPs should be doing for themselves before their knee-jerk reactions lead them to such blatant mis-diagnoses.

I totally agree. But these days I don't have the energy to fight with doctors. It's less taxing to just deal with as many things as I can. They find ways and means of insulting me and dismissing me every time they see me or talk to me, unless the problem I have is a visible one.

I know what you mean about not having the energy. I have put off so much in my life that really needs to be dealt with because of lack of energy but despite MDS/MPN I do, at the moment, have enough energy to deal with this. It doesn't stop me feeling upset that I have to spend so much time doing it.

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