Newbie please be gentle. Went private for blood tests, they came back normal and been told no way can it be my thyroid, feeling lost.

Where do I start, I have suffered with psoriasis, weight gain and struggle to lose weight, hair loss, heavy flooding and clotting with my periods until I got a hysterectomy (after fighting for 6 yrs) which I then found out I had been suffering with adenomyosis. More recently extreme tiredness, forgetting words, misplacing thing and forgetfulness, cold all the time, dry skin and nails, feet are cracked blah blah blah.

Doctor says I am stress, I am not! I work for my husband in an office, I have grown up boys who live at home and work, I have 2 wonderful bulldogs who I love and I can have time off when I need it, in fact life is good, apart from my health.

I went to my doctor as I had lumps in my neck which I found out were raised lymph nodes due to recent Psoriasis flare up, explained tiredness and was sent for full blood test TSH was 2.6 so no issues as far as he was concerned. So went to private Dr and paid for Thyroid tests, he did Free T3 & Free T4 as well as TSH, it was only 4 wks after the last one. Here are my results:

TSH 3.11

Free T3 4.6

Free T4 12.6

Antibodies negative

The private doctor has written to me and said due to normal levels there is no way my symptoms are down to my Thyroid. He wants me to go to a sleep clinic for a sleep apnea test which I am not doing.

I am lost, I feel so tired and I don't know what to do next. Judging by my results should I give up?

I was thinking of paying for Vit d & B12 tests, I have already spent £800 on private tests and appointments.

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66 Replies

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  • Hi Kerry ,well I wouldn't take too much notice of results ,how I wish we were back in the 50s when drs went by how the women felt.I had numerous tests because I knew something was wrong ,ended up going to a top endocrinologist he said I was really bad and gave me slowly over months a high dose .Needless to say I had to go back to my dr for further treatment and guess what they all came back borderline so no treatment for me .I have just given up .xxps Wellcome by the way xx

  • Hello and thank you, I know my body and I know there is something not right. I am sorry you have had to give up, it isn't looking very good for any of us on the borderline is it x

  • No it's not Kerry but don't go by me I have a problem going to drs in first place but the endocrinologist I saw was wonderful to me and I trusted him enough to open up. Don't you give up though I would encourage you to keep fighting for what you need that's if you feel up to the fight . Hope you're day is not to hard but I know it's like walking through treacle . Xx😇

  • Sympathy and prayers for you KerryHomer40 . When Dr's don't trust patients and go strictly by lab results we are on the loosing end . Trust yourself if you don't feel right or well then it must be so . It's very frustrating when Dr's don't TRUST patients . Labs are ONLY serum results . Symptoms are more telling they are cellular . Hang in there don't give up ask your pharmacist for Endo/Dr referral . They know because they feel out scripts for these Dr's .Ask around from friends for good Dr's . Keep going till you will find a Dr that hears you and thinks out of the box . And does not TREAT strictly by labs .

    Best wishes on your next steps forward .

  • I will keep going I have good and bad days, my hubby is fantastic luckily and I am sure there is someone with answers for me I just need to find them x

  • Great news you keep going , only you know how you feel . I forgot to say that even with my other illnesses I felt so much better , we even took a holiday and I had energy to walk and I enjoyed it so much . Keep in touch let us know how your going on . I wish you joy ,success in getting some help and peace . Xx😇

  • Thank you, will do x

  • Xx

  • Same case here kerry.I have TSh 4.99 and my doctr says its fne.but i hv all symptoms but no one help me

  • Fauzia123,

    If you can't find a doctor that can help then the only thing you can do is use the knowledge from this forum to educate yourself.

    You'll then be able to decide what steps you can take to improve your health and possibly self medicate.

  • Thnx dear i will defintly follow all my friends instruction.keep helping me

  • Your blood test results are OK, it is most unlikely your thyroid is failing. However, you describe clear signs and symptoms of hypothyroidism. I was in a similar situation and the only way to find out is a trial of thyroid hormone. It's very difficult to persuade a doctor to do this but I can't see any other way forward. Ask you doctor for a three month incremental trial of levothyroxine, starting on e.g. 50 mcg. They can monitor your response and signs such as dry skin which are very specific for hypothyroidism.

  • Interesting I have very similar results and feel the same. I have a sleep apnea test in a couple of weeks - I will try the sleep study, but I don't think that is it. I know how you feel. :(

  • Sleep apnoea was a symptom I had which went when on Levo thyroxine .There are other causes but being hypo is clearly a cause..

  • TSH 3.11

    Free T3 4.6

    Free T4 12.6

    Antibodies negative

    Do you have the reference ranges for your results? It is almost impossible to interpret results without them. Having said that, a TSH of over 3 is a massive warning sign suggesting that you are already hypothyroid, and you would get treatment in some countries, but sadly not in the UK. However, it is possible to self-treat by buying thyroid meds online. (Although it is getting more and more difficult, I will admit.)

    Private blood tests can be bought online without the necessity of seeing or paying a doctor. It saves lots of money. And we can interpret thyroid-related test results, and results for several of the basic nutrients. We can also help with saliva cortisol tests to some extent.

  • The only guidance I had was this

    TSH should be 2-4 mine 3.11 when medicated they want your levels to be 1

    Free T4 should be 10-24 mine is 12 when medicated they want your levels to be 20

    Free T3 should be 3.9 - 7.7 mine is 3.11

  • Kerry

    Your T3 is way way too low

    And your info is wrong

  • Thanks for letting me know x

  • Your doctor clearly doesn't know what the TSH is of healthy people. Luckily someone has done the research and it is available online.

    Note that reference ranges do vary, but TSH doesn't vary as much as other thyroid function test ranges - they are usually something like 0.3 - 4.5 or perhaps 0.5 - 5, or something like that.

    This graph shows the distribution of TSH in healthy women with no known thyroid disease :

    web.archive.org/web/2004060...

    You can see that the most common value (the Mode) is at 1.25. The idea that a healthy TSH is 2 - 4, as your doctor said, is complete and utter nonsense.

    The data for the graph was gleaned from this paper :

    eje-online.org/content/143/...

    The most important part of that paper (from my point of view), is the right hand half of Table 3, which you can find on the fourth page.

    I don't know how old you are, but let's suppose you are under 40. According to the table I pointed out, the median value for TSH amongst healthy women with no TPO antibodies is 1.3. 95% of women under 40 have a TSH between 0.37 and 3.3.

    [The median is the value which is right in the middle of a sorted group of values, sorted according to size. So 50% of women have a TSH which is between 0.37 and 1.3 in my example, and 50% of women have a TSH which is between 1.3 and 3.3.]

    Your doctor is going to keep you ill. You could spend lots of money trying to find a doctor who actually knows his stuff and who is compassionate, and yet never find one.

    If you want to learn about the thyroid and how it works your best bet is to buy this book. It is what got me started. :

    amazon.co.uk/Your-Thyroid-H...

    There are lots of entries for that book on Amazon, at many different prices. Check that you are not being ripped off. I saw someone trying to sell a second hand copy of the book for over £40 once, despite the fact a new one would have been about £12 at the time.

  • Is it terrible that the thing that stood out most for me was you said I was under 40, I am 40. Seriously though thank you, I think it is time for me to read up and know what is what as these GPs don't seem to want to help.

  • Doctors have been told that hypothyroidism is easy to diagnose and easy to treat. They just have to wait until TSH is over 10 and then prescribe Levothyroxine.

    If the patient complains of hypothyroid symptoms with a TSH less than 10, or after their TSH has been brought into the reference range with Levothyroxine then either they have "something else" wrong with them, which doctors never try to identify, or they are depressed and anxious and need anti-depressants and/or counselling and/or CBT, and/or they are a hypochondriac.

    Oh, the other thing is that every cell in the human body needs T3. So if it is at too low a level then the number of possible symptoms is absolutely huge (300+), although nobody has them all. But doctors don't know this and only accept a very limited number of symptoms as being related to hypothyroidism.

    What patients complain of :

    hypothyroidmom.com/300-hypo...

    What doctors believe :

    cks.nice.org.uk/hypothyroid...

    That is why this forum has over 60,000 members and is growing rapidly. We are having our lives stolen from us and our only choice is to help ourselves.

  • As depressing as that information is, is shows me that I have to take control and not wait for a GP to listen as chances are they won't. My hubby wants me to keep going to a private GP but I see it as a waste of money we need for other things, I need to start reading up! This forum has been for helpful in the last few hours than my GP has in the last few years x

  • Yes,it is time to read up about thyroid health & in particular the borderline issue.It seems to me some people get diagnosed underactive with very high TSH,but are still functioning well.Others have a TSH considered by the medical fraternity to indicate"its not your thyroid"and they are in a state of fatigue,exhaustion & brain fog!!Everything you need to know is on here!Keep reading people's posts,use the search box.

    I do not expect any knowledge or useful suggestions from GPs & most endocrinologists are no better,in my experience-with one exception.The local endo here agreed to prescribe T3 to use alongside thyroxine.A breakthrough for me.That was 2 years ago.Now a peripatetic endo is going round the country cancelling all T3 prescriptions.He said my endo was the worst for over-prescribing T3 he had come across.he wanted me to go on a low dose of thyroxine-only.I dumped him pronto.

    Thanks to this wonderful resource of knowledge & experience,I have gained enough confidence & clarity to buy my own meds over the internet.

    Don't give up but give yourself time to absorb the info.Its hard when mind & body are so fatigued.It can feel scary & overwhelming.

    I also recommend"Stop The Thyroid Madness"website.

  • I am actually feeling very positive after reading all these comments, I can't sit around and hope someone will help I have to do it myself. Thanks x

  • I came across "Thyroid for Dummies" UK edition in the local library . A little out of date but good for much general information and debatable issues are mentioned .

  • Hi May I first of all say your account is not unusual!

    I agree with the other members on here.

    I had a sleep apnoea test at home and there were some mild irregularities with oxygen saturation levels so now have to have an in depth one done in hospital, the fancy word for this is polysomnography , probably misspelt it but should be able to google it !!!!!!.

    I was amazed to read that seep apnoea can be linked to several conditions so that may be the reason that one is being recommended for you.

    I may be given a trial of cpap at night.

    I was wondering why you do not wish to have a sleep study done. It is available under the NHs.

    Take care

  • I didn't score high on the Epworth Sleepiness Scale, the only symptoms I have is I fall asleep in the car on the 40 min journey to and from work (don't worry my husband is driving) and I don't snore at all.

  • I was dropping off whilst at the wheel,and at 8.15 on the train ,thought it was a lingering infection..

  • The tiredness was what upsets me most, I used to work shifts in a children's home. On a sleep in I would be lucky to get an hours sleep out of a 24hr shift and I would be able to carry on no worries. I now work in an office with my husband so low stress, 9-5, time off when needed. My day goes as follows up at 6am feed dogs 6.30am walk dogs 7am get ready for work 8am leave for work, we have a 40-60 min journey and I will fall into a deep sleep for most of it and again on the way home at 5pm. Once at work I struggle to stay awake if I have slept in the car, I have been trying to keep my mind busy in the car and fight the sleep. I get home at 6pm feed dogs make dinner, 8-9pm walk dogs 10-10.30pm bed and straight to sleep. I used to suffer with insomnia but that hasn't been an issue for a while.

    Don't get me wrong I do have periods of time when I don't fall asleep in the car, I went all last week no issue and my energy levels were better too then yesterday sparked out all the way to work. If I am driving no worries.

  • Hi & Welcome

    Are you taking any hormone replacement therapy since you have had a hysterectomy? Just wondering if its worth asking your GP to test your sex hormones to see if this is causing symptoms. Also ask for Vit D3 and B12, Ferritin and Folate to be tested along with a trial of levothyroxine like Jimh111 suggested.

  • Hi, I kept my ovaries and they are still working for now so I don't take any hormones. I am looking into paying for the other tests as we speak x

  • I would ask your GP to do did so you shouldnt need to pay, just ask him or her to rule these things out as you want an explanation for the fatigue etc. Just a thought...

  • I am only paying because I feel like they don't take me seriously and don't really want to go back there.

  • I understand. I've been offered antidepressents in the past and a diagnosis of M.E!! You've gotta watch em! If you do find after you've had your vitamins tested that they are low or low in range ask on here for details of good manufacturers (in a new post would be best) where you can purchase from, i wouldnt do the multi vitamin tablet as they tend to be a bit weak. I would comment that in my opinion (im not medically qualified to say this, its my opinion) your thyroid is failing and will need thyroid medication, its just a case of how long your doctor makes you wait...mine waiting until my TSH was nearer 10 which was really frustrating but you can help yourself with the vitamins but you seem pretty clued up Kerry so hopefully things will start improving for you soon, and you've found this forum too.

  • Thanks, I have been here before with other health issues. I spent years trying to get a hysterectomy, to be fair I first asked at age 12 lol. Years of trying different treatments, I had 2 boys by the time I was 21 and didn't want anymore. In the end I lied and said the pain and flooding was so bad that it made me want to kill myself, they then agreed but the consultant said not until I lost weight. I struggle to lose weight and he kicked me out of his office hysterically crying as I knew I wouldn't be able to. 6 months of double HIIT boot camp sessions 5 times a week costing £100 per month and a eating clean diet of low fat protein, veg and fruit nothing else and I could only get my BMI down from 40 to 38 but he agreed and suggested I worked harder!! I think I have have been suffering for years with a thyroid problem but my other issues have got in the way. After talking to everyone on here I have gone from tearful and giving up to well maybe I am not going mad after all.

  • Nah, you're not mad. You will get help here. All that exercising probably depleted your FT3 levels. I have hashimotos which is autoimmune hypothyroid, low estrogen and progesterone and low vitamins, i'm trying to rebalance all of these things but to be honest it isnt an exact science...ive put on 6 stone in as many years but mostly at the start and am still trying to get well. Some folk get prescribed levothyroxine and do well on it...i hope that will be you...the ones that dont do so well you will read about on here. i think my complications are my age (44) as i am nearing perimenopause and lack of nutrients which are hindering my thyroid healing but i'm on my own (apart from this forum) with that as doctors only look at things in isolation sadly.

  • I am so happy I have found this forum sad that its needed in the first place though.

  • My fertility specialist prescribed levotjyroxine as I was 3.5 on tsh and they like it to be 1-2. Could you Go somewhere new and private on a fertility angle ?

  • I will look into it x

  • Total liad if old rubbish ...from a private doctor thats horrendous i trust he was not from TPA list because he needs striking off

    Of course you are hypothyroid your

    TsH is3.11

    And your free t4 is near bottom at 12.6

    Sounds like you nedd to order NDT and self treat and prove him wrong

  • Thank you, he made me feel like I was an idiot.

  • No the idiot is him

    All my lot are hypothyroid and all were diagnosed with a TSH of 2.9

  • Psoriasis is autoimmune, so you may have leaky gut. Leaky gut can be gluten intolerance

    A good book to read is Susan Blum - The Immune system recovery plan

    Medichecks or Blue Horizon run private tests. 100's of us on here use these. The most popular and best value is the Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven. But it might be worth paying a bit more to check Reverse T3

    If you do decide on including reverse T3 it has to be a private blood draw. But the other ones you can do DIY finger prick test

    I would suggest a retest of the thyroid, especially if it wasn't done early morning and fasting

    Low vitamin D, folate, B12 and ferritin can all affect thyroid or be affected by thyroid

    Sleep apnea and thyroid articles

    thyroidpharmacist.com/artic...

    verywell.com/can-hypothyroi...

  • Thanks x

  • I have normal thyroid figures apart from rT3. It can be called Euthyroid Sickness Syndrome or Wilson's Syndrome. You get hypothyroid symptoms but the thyroid appears to be well.

    One idea is that some underlying other problem is causing the trouble, possibly your hysterectomy, or something else, and once the underlying cause is rectified then the symptoms go. The other idea is that after a while, you can get stuck converting an inappropriate amount of T4 into rT3, and this needs treating with T3 to sort it out.

    I got mine tested at Medichecks with a discount code. Not cheap, but it did find the problem. My rT3 is 26 in a range that is supposed to stop at around 24.

  • Thanks, its thyroid Thursday On medicheck so I will look at discounts x

  • If you want to pay for more private testing, then read this page and follow the links :

    thyroiduk.org.uk/tuk/testin...

    You'll be amazed how many tests are available at much lower cost than any private doctor would charge you. The only fly in the ointment is that many NHS and private doctors won't accept private test results that the patient has organised for themselves. This is despite the fact that the companies we are doing business with do a lot of their testing using NHS labs doing private work.

    So, when you do private testing assume you are doing it for yourself, and that you may have to do your own research into the results. However, we can help with thyroid results, many nutrient results and also some saliva cortisol results.

  • I had all of the symptoms you mention for over 20 years, my blood tests always came back normal for every single thing. But I have fibromyalgia it was only in May this year my thyroid levels changed and now im on meds for my thyroid a lot of fibromyalgia and thyroid symptoms are the same x

  • I am surprised at how much isn't being done and how overlooked this is, although I shouldn't be as my son is Type 1 diabetic and I had to go private to get him diagnosed as I didn't think a 6 week wait with high blood sugar at 18 yrs old and weighing 7st was good enough. Private consultant diagnosed that evening and got him back in the NHS system with a good supply of insulin. It would make you think we can afford all this private treatment but far from it you just do what you have to.

  • I wouldn't focus on your thyroid blood test results. Your TSH is only slightly above average but within the range of healthy people. Again your fT4 is a little low but fT3 is OK (assuming these tests have typical reference intervals). Your antibodies are negative so you are not developing autoimmune thyroid disease. Your thyroid is fine. If you focus on the thyroid gland then a small dose of levothyroxine will bring your TSH down to about 1.0 and fT4 up to around 16.0. You will then have very good blood test results but still won't be well.

    You have a number of signs and symptoms with normal hormone levels. This suggests either you do not have a thyroid problem or you have a form of peripheral resistance to thyroid hormone (peripheral meaning it does not affect the pituitary / blood tests). The only way to find out is to see how you respond to a trial of thyroid hormone. If you get better without signs of hyperthyroidism then fine, if you start to develop hyperthyroid signs then it is not due to thyroid problems.

    I would not bother with further tests as they are largely a waste of money, at least until you have been on thyroid hormone for a few months. Your extensive symptoms are not due to marginally below average thyroid hormone levels that are within the limits of a large part of the healthy population.

  • Did you read this, jim?

    "Free T3 should be 3.9 - 7.7 mine is 3.11"

    I don't call that 'healthy'.

  • I think that is a typo, a mix up between the TSH and fT3 results: -

    TSH 3.11

    Free T3 4.6

    Free T4 12.6

    I think she meant to write "Free T3 should be 3.9 - 7.7 mine is 4.6".

    The point I am making is that the fT3 and fT4 are both a little low and could cause some mild symptoms. Her signs and symptoms are much more than you would get with her normal blood hormone levels that are just a touch low compared to the average. Therefore I don't think it is worth focussing on these numbers. If she receives sufficient thyroid hormone to raise her levels to the population average she will still have most of her symptoms.

    There is nothing to suggest there is anything wrong with her thyroid gland. There are quite substantial signs and symptoms of hypothyroidism which presumably are due to impaired peripheral thyroid hormone action. So I'm suggesting we don't get hung up on the blood test and she tries to get a trial of thyroid hormone. If she responds to the hormone without any signs of hyperthyroidism then hypothyroidism has been confirmed.

  • Ah, yes, I see what you mean about the results.

    However, getting a trial of thyroid hormone won't be easy without getting hung up on the blood tests! Because that's all your bog-standard GP is interested in. So, she's got to convince him that those levels are the cause of the severity of her symptoms - which they very well could be, as we don't all react the same way. And, she's not going to manage that without thoroughly believing it herself. So, it's rather unkind to under-mine that belief. Unless, of course, you are suggesting she self-medicates? Sometimes we have to use a little psychology.

    Sorry to talk about you in the third person, KerryHomer40. :)

  • I always regard self-medication as a very last resort, if only to ensure doctors have been thoroughly harassed before giving up! The blood hormone levels are not the cause of this level of symptoms and achieving ‘optimal’ levels will do little to resolve Kerry’s symptoms. I take the view that we should adopt a scientific approach and so couldn’t support the idea that the blood test results suggest hypothyroidism. My concern is that this just reinforces an irrational over-reliance on blood tests. I think we might have to disagree on this one.

  • Well, that'll be a novelty! lol

  • A bit of healthy debate is good, thanks for questioning though as I am very green to all this and it helps me to understand x

  • Oh, you'll get plenty of debate on here. :)

  • Might be worth self dosing with a trial of low dose NDT - if you've been deemed "sub clinical" Hypo. Start a new post asking for members to PM you for source of NDT.

    stopthethyroidmadness.com/n...

  • I'm with SlowDragon. Try diet for autoimmune issues. I wouldn't rush to medication. For me LCHF has done a lot of good. Low fat is not good.

  • I haven't seen anything on reverse T3, big factor. Lots of info on youtube, search for rT3

  • Never apologize for being a newbie! Askong questions is the right thing to do! You absolutely have thyroid disease! You need to find a new doctor! Preferably an integrated or functional doctor. I myself went through 9 endocrinologists before I found my integrated doctor,

    Optimal levels are;

    Tsh = .5 - 1.5

    Ft3 = 3.7 - 4.2

    Ft4 = 1.3 - 2.8

    You need help with all levels, you need to be on a natural desiccated thyroid hormone like naturthroud or WP Thyroid. Both are by prescription.

    Thyroid disease zaps both b12 and vitamin d.

    Go to Facebook and joins treating thyroid disease with LDN and you'll learn a wealth of information!

  • Thank you x

  • l dont know enough to comment on all your issues but after many decades of being ignored by GPs l had huge help from an amazing Healer who suddenly passed - but kept me going for many years and now its downhill all the way, mainly over-tired and easy weight gain. The healer spent a year originally working on my Pituitary - and its suddenly dawned on me that that is where my problem is! The Pituitary triggers the Hypothalamus which triggers other hormones. Have a look on Pituitary Foundation which usually appears above Thyroid UK. lt is a less common problem than actual Thyroid but can be devastating. There are anumber of Webinars on their site explaining Addisons Disease & others. Their volunteers are very good on phone and the Endo Nurse, and agree that is where my problem lies and l now have an appointment at the major area Hospital which they say is Centre of Excellence, and l just went to a meeting they put on at Soton with the Snr Endo Consultant and Surgeon who answered questions for 2 hrs in their own time.

    l had been another local hospital which was useless (PF agreed) and was told nothing wrong and refer me for ME - despite the long long list of female problems and serious PMT. l was furious and told GP not going. I told PF l was writing a letter to GP which wd have go thru Practice Manager as no direct email, then she wd have to take it in. He said involve the Practice Manager and ask for meeting, that is what he is there for! l got a slight curt reply (not the meeting l wanted) but when l saw her after that, she was ok and l got the major referral l needed (long wait) to Endo after bit of a strop.

    As l see it a major problem is that GPs only do a 'basic Thyroid test' which doesnt pick up other issues like mine. That hospital blood tests --which were done here- showed Low Cortisol which relates to low energy tho not acted upon. You may not be aware that the local Laboratories doing GP tests have different limits in different CCG areas and here for example they seem to refuse to do a T3 test even if ordered - so that if it shows up a need then GP has to prescribe it (currently at vast cost). Labs do not even say they arent doing that Test! You will gather on here that many order privately abroad if its needed, tho l have heard hints of a new supplier.

    It does seem almost the norm that GPs do not understand Thyroid at all and worse still are not aware that they dont know. My T4 is consistently on bottom figure or below - and they dont even question it. Just quote: normal or just below. lts exasperating.

    Good luck with all

  • Thank you, I will have a look at Pituitary Foundation and sorry to hear you have struggled too x

  • It seems all too common Kerry

    Best wishes

    Helen

  • Its good you had your tests done privately. Now I had mine done privately and nhs both tests results different but i knew private ones were right because i was so very very ill. Also, on private test I noticed my B12, ferritin (iron) |Vitamin D were all at the very very lowest end. I asked for B12 injections and they wouldnt do a thing.

    Being very ill and now in severe pain (neuro pain) I joined a group for Pernicious Anemia. Well well well, I had everything. So bought everything I needed to Self inject plus Co factors (extra vits needed for B12 to work properly Plus Iron) and I think its saved my life! Its on facebook and free.

    The symptoms of thyroid and B12 are very very close. B12 def is very dangerous if untreated. Give it a read you've nothing to lose. Thats all I did and discovered myself how dangerously ill I was/am. Hope I've helped you in some small way

    Best wishes and good luck :)

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