Hi How do you feel? What treatment are you on. What about a Free T3 test?, lots of us have to have this on line,as some NHS Labs will not do it.Yours could be low, if it is a little T3 with Levo, guessing that is what you are on. Some gP`s are getting difficult about prescribing T3, your T4 does not look too bad. Also make sure the annual checks have been done, Diabetes, B12 + foliates B12 and foliates need to be high in range, these are all autoimmune hormonal.Just hormonal vit D, if low, corrected calcium before treatment, hopefully Endo or GP on a script, recheck after 4 months treatment to check levels.Most important ferritin/ iron, should be clearly in range.
I mostly feel terrible, please refer to my reply to Natalie. Have no other thyroid based results, they only check TSH and if that's high, test the T4. Finances being what they are would have to wait quite some time to get tested privately. Diabetes was checked for some years ago, and was told I was OK. B12 never tested. The note under the 8.1 TSH reading states, subclinical hypothyroidsm - suggest annual review, so doubt GP will treat or refer to endocrinologist, again please see reply to Natalie.
you look hypothyroid to me but what the doctors might call borderline/subclinical. You would probably benefit from taking thyroxine. unless you feel amazing but I'm guessing you don't. How is your cholesterol/heart rate/blood pressure? Ever been tested for antibodies? Family history of thyroid disease?
On the blood test report is stated subclinical hypothyroidoism under the 2 highest TSH results. I can't understand the drop of TSH to 2.5 in 2012 after a reading of 7 in 2008 and then to go as high as 8.1 in 2013. I have most of the standard hypothyroidism symptoms and am mostly concerned with the extreme and excessive fatigue which can have me sleeping for up to 30 hours at most, and at least 15 hours most nights. Blood pressure was said to be normal a couple of months ago, and I only have a reading for cholesterol dated: 9/7/12 at 6.7 mmol/L. Never been tested for antibodies, that I know of. Not known family history of thyroid disease but as most illnesses in family were not diagnosed for many, many years, eg: serious heart problems and cancer, wouldn't be surprised if a lesser problem such as thyroid disease was missed. GP dismisses my symptoms, and just thinks I'm lazy and depressed. She said that if my last blood test results came back abnormal she would refer me to an endocrinologist, but doubt she will on the 'subclinical hypothyroidism' diagnosis, though I'm thinking of writing to her, pointing out that the first diagnosis of subclinical hypothyroidism was as long ago as 2007, which I was never informed about, and list all my symptoms, perhaps she will refer me. I've never received any form of thyroid/adrenal treatment.
Hi I would not write to GP but see them, stress how ill you feel. It could be Graves in particular as that causes the bloods to go up and down, It is a pity about the pro[per bloods as that would show a different story. The antibodies ,I would not worry as the treatment the same, a relatively new test You could also ask for a trial of a low dose of levo ( T4) it is very cheap!
A lot of GP`s are not good at diagnosing anything, thyroid common but not simple, why there are Endo`s Just say you want a second opinion to make sure the GP is right!I was 22 years before I got treatment, so feel an authority on that!
Before you ask for a referral, look up who you want to see, and give a name, good and bad docs.
Hi Jackie, thank you. Well I've tried stressing to the doctor how ill I feel over the years, hence the blood tests. The last time I saw her in Oct 13 she said she would refer me to an endocrinologist if my blood test results were abnormal. But as according to the laboratory and most GP's understanding of hypothyroidism, the result needs to be TSH 10+, for them to act, so my mere result of 8.1, I doubt will have her doing anything. I have read though that persistent subclinical hypothyroidism combined with symptoms of hypothyroidism could/should be referred to an endocrinologist, or treated with thyroxine. So as she doesn't take me seriously face to face. I thought if I pointed out the long history of subclinical hypothyroidism and listed all my symptoms, she might finally have a change of heart. Though I only discovered the subclinical hypothyroidism for 2008 when I requested a history of blood test results for Oct 2013. I needed this as I had decided to see a private specialist who said that he thought that I had thyroid problems for many years and this has been combined with fatigue and exhaustion of your adrenals. These two problems have created all symptoms. He prescribed Nutri Adrenal Extra (NAX) product code: 3205) and Nutri Thyroid (NT product code: 3201), both obtainable from nutri.co.uk, though I will look for a cheaper alternative if expensive. He recommended that I start with 1 Nutri Adrenal Extra at breakfast and after 10 days have also one at lunch, then later if required 3 a day one with each meal. After 3/4 weeks, start also with the Nutri Thyroid, again with 1 at breakfast, then after 10 days two, then three later on.
Hi Is there anther GP in the practice? otherwise find out when your is a ways, try a Locum. If nothing like this any use, just insist on seeing an Endo. Not easy and they can say no, however, in practice generally do not, in case they are held to be to blame. Most of us have had to do this, it took me 20 years!
Tell GP if you do not have the "correct " treatment you r heart is at risk and you will hold him personally responsible, there is a well known link.Do not be fobbed of with a psyche, can happen, but they are fully aware of the thyroid problems.
Really I doubt any thing not on a script, or the same from abroad, will help you.
Hi Jackie, do you mean that not anything that isn't on prescription will help me? Do you not feel the Nutri Adrenal and Thyroid will have any effect?
Is it possible to, and should I make sure to be referred to a particular NHS endocrinologist if I get the list of the good ones from someone on this forum?
Hi I do mean that any thing bought in this country will not do much. Thyroidism is a disease and needs treating as such.
My Endo is private, but there are some good Endos NHS, not all Endo`s like any docs are good!. Louise has a list if you e mails her. louise.warvill@thyroiduk.org. If none near, you can ask on the site, for messages by PM, in the area you are looking for. If that does not work, then use the WEB, a bit more complicated, Most good consultants have a CV on the WEB, Before you see any Endo, check with their sec., what treatment they like, and will they treat on "how you feel" with the bloods. All my good consultants, all sorts, do that.
If you want to do that, find the consultant first, then ask GP for a referral..
Thank you Jackie. I emailed Louise and will follow the other suggestions if necessary. So what are you taking yourself? What was your TSH and FT4 before you were treated? And, how quickly did the medication take effect and what were the effects?
Hi I am a bit complicated as I have 12 co-morbidities, so cannot have surgery, biopsies etc.
I have always had a immeasurable TSH, which can be Pituitary gland, but Endo done the test ( 24 hour urine collection ) a few times, not that. I also have a PTH and calcium problem, extremely over range.Tested too She did treat my very low vit D, still keeps an eye on it but I cannot have treatment. because calcium so high over range.
Going backwards, in my twenties, a consultant wanted a GP to refer me for my thyroid, it was causing a lot problems. She refused, knew better!!! Even in my NHS notes.
After that, I found a private doctor, tried 4 makes of thyroxine ( T4) could not take it, made my already bad heart very bad.Went onto armour.private doc never mentioned anything else or blood tests, no WEB, TUK or on line bloods then. After 2 years, never better but very ill.My then Cardio insisted I see my present Endo, only too pleased ,to just what I wanted, a referral. I was then on 7 armour, very Hyper, when I finally had the bloods done., but felt the same and as ill as when Hypo . I saw my Endo, she found loads of things wrong, suggested 2 grains and armour, but as my FT3 below range, 20mcg of that. been stable ever since, a long time. See her still because of the other things and thyroid/heart.
Long ago, TSH was not considered as it is now. I was treated purely because my FT3 was below range.Of course, I became worse with time.
That is most of my thyroid history.
I hope it helps. Unfortunately not so unusual. I missed the bit where because of this GP`s mistake in a mental hospital for 6 months, that was the final straw. It has been removed from my NHS notes, as completely sane! It took a while too, thanks mainly to a brilliant famous psyche, who did not mind admitting he was wrong, because the tests had not been done, before I was diagnosed, mentally ill! The only think ,it does give one such an insight of treatment if really mentally ill.
Hi Jackie. Sorry to hear about your heart problems. Do you think your thyroid problems led to heart problems or you're just unlucky enough to have both? Thank goodness you finally found an endo who prescribed correctly and your feeling better.
Your experience of being diagnosed as mentally ill nearly happened to my mother, after she complained for years about certain symptoms. Someone was sent to her home to assess her mental state!!! Of course it wasn't for years later that they finally discovered she had a far more serious heart problem than previously diagnosed and after 3 months of keeping her in hospital, they finally decided her arteries were too fragile to take the bypass surgery they had been planning and which she didn't want, and sent her home with meds, telling her she might have a couple of years left. She lasted about 10 years of very poor quality of life. She was actually much more healthier and robust before the long hospital stay.
PS. Whilst I'm readying to do battle with the GP over thyroid treatment/referral, would it be OK to start taking Nutri Adrenal Extra, or will that effect test results supposing my efforts lead to additional/re-testing by GP or endo? I've just found a site that sells 60 tabs at £14 with free p&p.
I do not thing it is strong enough to effect the tests and if it was me I would take it, any little help, However, I would not take it the morning of the blood test.
Hi Well to be fair my heart did complicate things.Although often happens with thyroid disease.Fortunately now psyches well aware, better than GP`s! Afterwards when I sorted help, I could not get a referable, so limited. Then after 2 years on private doctor treatmentI was told the over treatment, caused me to have my first Cardiac arrest by the Cardio.. Myself I think it was a combination of things. However, there is a strong link between thyroid and Atrial Fibrillation. A.F is not too serious but needs diagnosing so that anticoagulents can be given.Cardio`s often send patients to Endo`s and are very keen on doing the 3 thyroid tests My heart problems were very long standing. There was no real diagnosis years ago, or help. Last few years tremendous leap in medical diagnostic tools.
Sad about your mother, but may be those 10 years she enjoyed, not easy to tell unless it is you. I tell my family , to not dare say"it was a happy release
This and similar misadventures is really why as regards thyroid, I consider bloods vital, onluy way to be sure of what is happening. I also learnt tto check on even the most brilliant Consultants!
Hi Jackie, so basically you can't be sure what came first, heart or thyroid problems, though the over treatment of thyroid problems could have caused or simply exacerbated an existing heart problem?!
My mother got some enjoyment but very poorly and would have been in a much better physical state had they diagnosed and treated her 20/30 years earlier.
Thank you for your advice on the nutri adrenal extra which I have now ordered, which also brings up the point about the benefits of treating adrenal problems before thyroid treatment is given. Please see below regarding taking thyroxine with adrenal problems, headed: 'What Happens if I Take Thyroxine with Adrenal Problems?'
Also I would appreciate your thoughts of synthetic thyroid such as: levothyroxine brand names: Synthroid; Levoxyl; Levothroid; Unithroid as opposed to natural such as: is Armour Thyroid, Westhroid and Nature-throid?
Also a point worth mentioning and would appreciate your comments on, inherited genes from one or two parents could mean that although the body gets enough T3, the brain doesn’t. So that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents. Patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still. This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.
Please see the full the full post headed: 'The New DIO2 Gene Test' at the bottom of this post.
What Happens if I Take Thyroxine with Adrenal Problems?
Even if the adrenal insufficiency is slight, it will adversely affect thyroid conversion, tissue uptake, and thyroid response.
If the T4–T3 conversion doesn’t happen as it should, the body can become toxic through unused T4. If it is converted, but the T3 cannot enter the cell walls due to adrenal insufficiency, the T3 cannot be used, and may reach toxic levels. In either case, T4 and TSH blood tests will appear normal, but the patient may feel really unwell. (6) If a physician raises the thyroxine dose in this scenario, the situation worsens still further.
The reaction varies with degrees of adrenal insufficiency. Symptoms may include: a sudden feeling of exhaustion, nausea, headache, inability to concentrate, trembling, muscle weakness, loss of peripheral circulation leading to numbness, lack of muscle control, giddiness, slurred speech, and cognitive impairment.
And as the literature included with this drug points out, the result can be extremely serious in anyone suffering from severe adrenal insufficiency:
“Levothyroxine is contraindicated in patients with uncorrected adrenal insufficiency since thyroid hormones may precipitate an acute adrenal crisis by increasing the metabolic clearance of glucocorticoids [a too-rapid withdrawal of cortisol]. Patients known to suffer from adrenal insufficiency should therefore be treated with replacement glucocorticoids before starting any Levothyroxine sodium treatment. Failure to do so may precipitate an acute adrenal crisis when thyroid hormone therapy is initiated.(2)
Adrenal insufficiency must always be addressed before starting any thyroxine treatment.
Thyroid UK is very pleased to inform you that we are now working with Regenerus Laboratories Ltd in respect of the DIO2 Genetic test.
The DIO2 gene was researched in 2009 and the results were published in the paper entitled, "Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients" by V Panicker, P Saravanan, B Vaidya, J Evans, A Hattersley, T Frayling & C Dayan - jcem.endojournals.org/conte...
Firstly, you need to know that everyone inherits two copies of each gene, one from their mother and one from their father.
To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.
The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.
The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.
This means that there is a possibility that patients who are on levothyroxine alone and still have symptoms may improve with the addition of T3.
Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.
The study concluded, “Our results require replication but suggest that commonly inherited variation in the DIO2 gene is associated both with impaired baseline psychological well-being on T4 and enhanced response to combination T4/T3 therapy, but did not affect serum thyroid hormone levels.”
If you are still experiencing symptoms even though you are on levothyroxine, it might be an idea to discuss having this test with your GP although it is not available on the NHS so you would have to have the test done privately.
For more information on the DIO2 gene and the test go to:
Hi I have always had heart problems, at least the normal symptoms, but no tests at all at that time. At about 20, heart problems identified and developed thyroid problems, not treatment for 20 years, but had been identified. useless GP, then 2 years never right on the treatment, doGP would not refer me so had to see a private doc, too many complications for a private doc, Endo quite different, hen overdosed, heart much worse. Some related but I do not think all was.Although cardio did!He was useless anyway! My hear conditions are highly complex and because so much illness really woods and trees to a lot of docs.
I agree with most Endos that thyroid shoiuuld be right and then Adrenal glands tested. Tey do normally improve and the only real treatment is cortisone. Not a good drug to take unless essential.
Usually Ok to try the synthetic T4, then add some T3, depending on tests, then if a problem to change to any of the piggy ones as they are natural. Simply because there is so much opposition to the armour etc. Also to take T4 and T3 separately can be better controlled. I know that is my good Endo`s preferred option.
I do actually think T3 is vital, but only if the blood test shows it is needed. It is only fairly recently that T3 has been used and know about it, Until the 60 s it was just armour. When the synthetic came in and was so cheap that the licence NHS was not renewed for armour. I know some hospitals , my NHS one, on of the best in Europe are totally against it. I will not let them do my thyroid tests, as results are insufferable!
So T3 has not been used until quite recently, it is shown to help but I think it needs much more research to find all the ramifications of it. I know since my thyroid has been stable that side of things is good. Unfortunately I have other hormonal problems and thyroid corrected, PTH etc., but that is another story.
I am old, science and medicine has changed dramatically in the last 20 years, but still there is a lot to learn I so remember when the research was being done on the thought only of transplants.. I think one has to just go by proved methods and what one finds helps. Being on t3 does definitely lower the TSH, If it matters is of course open to debate. however, I could not mange if I did not have meds to make my T4 Ok and FT3 just under the top of range.Although my TSh is immeasurable.
I am sorry if that does not answer your questions,best I can do.
As for hereditary disease, I have some, they were not even known as diseases until about 40 years ago, even though life threatening etc.
Hi Jackie, very unfortunate that you had heart problems as young as 20 which wasn't treated for so long. Your comments on synthetic versus piggy and T3, very helpful.
What hereditary diseases do you have that were not known as diseases 40 years ago.
Hi Jackie, I've been convinced to get: thyroid antibodies;
iron; ferritin and folate; b12 and tests to rule out pernicous anaemia tests done before anything else. For these specific tests which areas should be ticked on the blood request form, or does the doctor just request these tests in the 'all other requests' section? For blood test form please see: healthunlocked.com/thyroidu...
Hi They are separate tests, but also the FBC is a good idea to give a good picture. Endo`s etc like B12 to be high in range, GP will not bother if in range, Ferritin/iron needs also to be well in range, Vit D ( hormonal) I cannot remember if you have had that, If D low ( hormonal) then corrected calcium before the treatment. keep on eye on both if OK be on D for ever. However, if corrected calcium goes over range, stop D immediately. If calcium very low, you may need treatment with both, NICE,
if GP impossible, Endos always do these tests. Failing that use "on line" but it should not be necessary. if on line the only one docs like is Blue Horizon, well known and used in most private hospitals.
Hi Jackie, I had a full blood count in Jul 2012: 13.3 g/dL (11.5-16.5). Hi reallyfedup123, as well as the tests on: thyroid antibodies; iron; ferritin and folate; b12 and tests to rule out pernicous anaemia, I think I should ask for T3 and FT3 judging by: ' T4 is the storage form of the thyroid hormones, and it must be converted to the active form, T3, before your body can use it. Some of us convert too slowly, so even though FT4 levels are good (or even a bit high in your case), FT3 levels remain low. As long as FT3 is low, you will not feel well. This can be remedied by lowering T4 meds a little and adding a direct source of T3 meds. FT3 often has to be in the upper half to upper third of the range before symptoms are relieved.'
Haven't had Vit D done, do you mean need calcium to correct low Vit D or should I also be asking for a blood calcium test? Anything else while I'm at it?
Hi regarding the T4 and Ft3, exactly what I always say, both tests equally important, common to not convert enough T4.. The other tests were too long ago. Should be done annually, more if on treatment. Thyroid much more until stable, then 6 monthly, at last, and any time you feel going "off".Vit D, a hormonal, essential test, you can get the same test through city hospital ( see the site) it is the NHS one costs £25, but your GP should do it, even if OK, annually,. If your D is low before any treatment you need a calcium test, it is the corrected one that matters, they often do 2. This is an electrolyte must always be in range. if low, below or just in range usually means you need some calcium with the D ( always on a script), to help you absorb the D. If high in range, care as the vit D can cause the calcium to then go over range, extremely dangerous. if calcium above range, D has to be stopped no matter what it is. I am actually in this position. Vit D, not really a vit, wrongly named, is very complicated, best looked after by an Endo. if not seeing an Endo, have to make do with GP, not ideal!If on treatment repeat tests after 3 months for calcium and the D. Low vit D causes lots of problems, especially it effects the thyroid.
Another doctor would have put you on thyroxine years ago. I think you need to change doctor because even if you persuade this one to put you on thyroxine she obviously doesn't know enough on the subject and everything will always be a battle I imagine. Find a doctor who will put you on thyroxine and get referred to a specialist too.
Hi Natalie, thank you. Please see my reply to Jackie before reading the rest here : ). If writing to my doctor or changing doctors results in being subscribed thyroxine, should I take this along with the specialist doctor's recommendations?
Hi reallyfedup123, thank you, do you think I should push for the further blood test at the GP's or simply push for a referall to an endo. I had been planning to point out in a letter that I have been 'subclinical hypothyroid' since 2008, (though strangely in July 2012, there is a result of TSH 2.5 mu/L (0.3-4.2 mu/L)), and list all my symptoms and urge to be referred to one of the endos on the good NHS endo list?
Also, the last 6-12 months, my nails have become bumpy, with ridges with a rough texture?
Hi reallyfedup123, thank you, I will certainly do that. I have ordered: Nutri Adrenal Extra, as a private specialist said I had adrenal fatigue which treatment should be started on a month before adding Nutri Thyroid. Would it be OK to start the Nutri Adrenal Extra before the additional blood tests?
For tests on thyroid antibodies; iron; ferritin; folate; b12 and tests to rule out pernicous anaemia which areas should be ticked on the blood request form, or does the doctor just request these tests in the 'all other requests' section? Please see following for image of blood test form:
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