Hello, I have done lots of reading over past year about thyroid function and have decided to come here for advice. In March I had thyroid autoantibody levels >1000IU/ml, T4 level of 15.4 and TSH of 6.65. My Dr advised a test in 3 months so I had another test in July and T4 was 15.2 and TSH was 7.92. My Dr suggested testing again in six months as I was changing my job and potentially having less stress in my life. I have just had a test and the TSH was 3.69 which was a surprise to me. I have these symptoms: aching muscles, brain fogginess (which is new), sore eyes, waking in the night, headaches, general lethargy, new feeling of cold especially feet, alcohol intolerance, low basal temperature. I have faith in my doctor, she knows me well. However I feel confused about why my levels have changed in this way. My doctor says the body is amazing and can sort things out. I am 48 so have been putting symptoms down to my age and menopause beginning. I don't want there to be a disorder however I don't feel quite right. I have a lumpy feeling in my throat quite often and a constant dry little cough, as well as a very dry throat (although I also take Solifenacin every other day which can cause dry mouth). In the past 18 months I have been given asthma and acid reflux treatment for these symptoms which sometimes relieve them.
Should I go back to my doctor and ask for further tests/discussion?
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MrsQ20
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thank you - I don't want her to think I'm a 'read it on the internet and now she is diagnosing herself' person. I was surprised by the latest result so accepted her saying 'it's a good thing and we don't need to do anything' but don't feel I have accepted that.
TSH - means 'thyroid stimulating hormone' and it rises when our thyroid gland is struggling to try to raise more hormones. It also rises/reduces throughout the day.
That's why the forum suggest we get the earliest possible appointments, fasting (you can drink water) and allow a gap of 24 hours between our last dose of levo and test and take afterwards.
This helps keep the TSH at its highest as it varies throught the day. Food can also affect it.
In March I had thyroid autoantibody levels >1000IU/ml, T4 level of 15.4 and TSH of 6.65. My Dr advised a test in 3 months so I had another test in July and T4 was 15.2 and TSH was 7.92.
Going by all the reference ranges for TSH that we see on the forum, I have to assume that your TSH was over range each time. In this case your GP should have started you on Levo.
Your raised antibodies suggest that you are positive for autoimmune thyroid disease aka Hashimoto's which is where the thyroid is attacked and gradually destroyed.
Please see article by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors) in answer to Question 2:
Question 2 asks:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in 2 or 3 months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune thyroid disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms, some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 2 to show your doctor.
I have just had a test and the TSH was 3.69 which was a surprise to me
As mentioned, test results fluctuate. But to get the most accurate results always do your tests under the same conditions every time. When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, coffee affects TSH so it's possible that other caffeine containing drinks may also affect TSH.
[* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.]
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use Biotin in the assay).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
I have these symptoms: aching muscles, brain fogginess (which is new), sore eyes, waking in the night, headaches, general lethargy, new feeling of cold especially feet, alcohol intolerance, low basal temperature. ….. However I feel confused about why my levels have changed in this way.
Symptoms of hypothyroidism. Because Hashi's means you can swing from hypo to "hyper" and back to hypo, you may also, at times, experience symptoms of hyperthyroidism. It's not true hyperthyroidism, just a Hashi's swing.
My doctor says the body is amazing and can sort things out.
No, not really your body sorting itself out, after the swings from hypo to hyper and back again things settle down again. This is the nature of Hashi's. Your doctor doesn't understand Hashi's.
Fluctuations in symptoms and test results are common with Hashi's. Unfortunately, most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test:
Vit D
B12
Folate
Ferritin
and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
You don't have to tell your doctor you've been reading the internet and diagnosed yourself, etc. Tell her that you have been in touch with the charity ThyroidUK (this is their forum) and they have given you some information. ThyroidUK is linked to from the NHS website page on Levothyroxine here, under Useful Resources at the bottom of the page:
Thank you so much for this really comprehensive reply.
These were my results in March:
Serum vitamin B12 level 446 ng/l [200.0 - 960.0]
Serum ferritin level 77 ng/ml [15.0 - 350.0]
Serum folate level 2.9 ng/ml [3.0 - 18.0] so my doctor prescribed folic acid for a short while. I have not had these tests repeated.
I will look up more about Hashimoto's and follow the links suggested. I am very grateful and feel able to chat with my Dr again. I don't know why she would be reluctant to prescribe? In March she said it wasn't something to worry about and if we start medication then that is a lifelong medication so to wait to see how it went.
I don't know why she would be reluctant to prescribe?
The reason would be because your TSH hadn't reached 10. That is the cut off point for primary hypothyroidism which is where the thyroid fails for reasons other than autoimmune thyroid disease. Even though the reference range for TSH is usually something like 0.2-4.2, guidelines for diagnosis of hypothyroidism say that TSH must be over 10, rather makes a mockery of reference ranges doesn't it! Autoimmune (Hashi's) is the most common cause of hypothyroidism, with about 80% of hypothyroidism being autoimmune. Considering that number, you'd think doctors would know more about it really!
In March she said it wasn't something to worry about and if we start medication then that is a lifelong medication so to wait to see how it went.
It isn't a medication in the normal sense of the word. Levothyroxine is hormone replacement. When you have hypothyroidism your own thyroid isn't capable of making thyroxine. Your FT4 results tells you how much thyroxine (T4) your body is producing. You haven't given the reference range but in a normal healthy person it would be around halfway through range or above. The lower in range it is, the less T4 your body is making. If your TSH is over range and your FT4 low in range that is hypothyroidism, your body can't make enough T4 of it's own and we need to replace it with synthetic T4 (levothyroxine). We can't live without thyroid hormone, so it's essential for life.
Serum vitamin B12 level 446 ng/l [200.0 - 960.0] - ng/L is the same as pg/ml
This is on the low side. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Serum folate level 2.9 ng/ml [3.0 - 18.0]
Folate is recommended to be at least half way through range (although your GP wont know this, they just go by the fact that if any test comes back anywhere within range then everything is fine). Your below range result showed deficiency and your GP was right to prescribe folic acid. However, one would think a follow up test would be done to make sure that your level had, in fact, responded and improved.
What you could do now, considering that your B12 is on the low side, is self supplement with a good quality, bioavailable B Complex. This will boost your B12 level and improve your folate level also. Good brands recommended here are Thorne Basic B or Igennus Super B, both contain the bioavailable forms of the active ingredients with the recommended methylfolate (rather than folic acid) and methylcobalamin - B12 - rather than cyanocobalamin.
Serum ferritin level 77 ng/ml [15.0 - 350.0]
Ferritin is recommended to be half way through it's range. Yours isn't dire but could be better. You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
I doubt that your GP will repeat the tests, they don't like to spend money, but you can always get them done with one of our recommended private labs who offer tests we can do at home either by fingerprick or by venous blood draw (extra cost). The cheapest way to do them is usually with a thyroid/vitamin bundle.
Did you have Vit D tested? This is also very important. If you have low levels of the others, very often Vit D is low too.
SeasideSusie - thank you so much for taking the time to reply in such a comprehensive way - it is really appreciated to help me understand. I may well consider the private test. I am vegetarian so cannot supplement with liver, but can consider other ways to increase this - I will look at the link. Thank you so much.
Yes I would go back to the doctor as your symptoms continue.
There is evidence that patients with very high antibodies can exhibit symptoms independent of thyroid hormone levels. Even if the thyroid can survive the antibody attacks it is still under attack and may explain some of your symptoms particularly the ones relating to the throat. The presence of high antibodies can also cause vague symptoms like brain fog, lethargy and eye irritation.
Helicobacter pylori is a bacterium that can cause gastritis and ulcers, it is also strongly linked to thyroid antibodies, the two tend to go together. There is some evidence that for patients with very high TPO antibody (> 1000) that helicobacter pylori eradication lowers TPO antibody levels. Since your doctor is prescribing treatment for acid reflux, they might consider testing you for helicobacter pylori and treating it.
There's a common belief that a gluten free diet will lower thyroid antibodies, most research does not back this up. Thyroid antibodies tend to lower in time, often when they have destroyed the thyroid gland!
It is quite possible to be hypothyroid with a normal fT4 especially when TSH is elevated and antibodies are present. It would make sense to have a trial of levothyroxine (more than 25 mcg) to see if you respond. Many of your symptoms could be due to hypothyroidism especially acid reflux because hypothyroidism can reduce 'lower oesophageal sphincter pressure' which allows stomach acid to reflux into the oesophagus. High antibodies tend to lead to hypothyroidism so there is merit in nipping it in the bud. If you find no benefit on levothyroxine treatment you can discontinue it.
In summary, I would ask to be tested for helicobacter pylori first. I would also ask for a trial of levothyroxine, this could be delayed for a month or two if you have helicobacter pylori since the treatment includes giving you acid blockers which inhibit the absorption of thyroid hormone tablets.
I think these are sensible, safe and low cost options that might well resolve your problem and so it is perfectly reasonable to ask your doctor for help.
Thank you so much for taking the time to reply. I did have a test for Helicobactor pylori about 18 months ago which was negative. I think the trial of levothyroxine is what I may ask for. Definitely from the replies in this group I have decided to return to my doctor. I just need to decide if I do some private testing or not too.
I don't think private testing will help much, you already know that your TSH is low and your fT4 OK. If you test fT3 I think it will be OK becasue your TSH is not low (TSH promotes T4 to T3 conversion). Rather than distracting your GP with more blood tests I would push for a trial of levothyroxine. You could run a private test once you have been on a substantial dose of levothyroxine for a month or two. There's a temptation to think that more blood tests equals better outcome, it's a trap I fell into many years ago.
Thank you - yes that makes sense. I have a good relationship with my doctor which is why I just accepted what she said but - as I said in my original post - I still don't feel right. I felt I needed more information to go back and ask again and this forum has been really helpful in me gaining that.
Forgot to say that selenium supplementation can sometimes reduce thyroid antibodies, just take the recommended daily allowance. Contrary to popular belief brazil nuts are an unreliable source, some have lots of selenium some have little, depends on the soil.
Unfortunately for us in the UK, all doctors have been told not to diagnose a patient until the TSH reaches 10. In other countries we'd be diagnosed when TSH is above 3 with symptoms. We used to get diagnosed upon the symptoms alone and given NDT (natural dessicated thyroid hormones).
TSH - is Thyroid Stimulating Thyroid Hormones - and it is from the pituitary gland - not thyroid gland. It tries to flag the thyroid gland to increase more thyroid hormones.
I'd suggest you tell your GP that you are a member of Thyroiduk.org.uk and are getting support. (you can become a member if you wish - the more members the stronger TUK has a voice). If thyroid antibodies are present in your blood you'd have an Autoimmune Thyroid Disease but treatment is the same.
Tick off your symptoms and always get a print-out of your blood test results always for your own records.
First - all blood tests have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take it afterwards. This helps keep the TSH at its highest and prevents doctor adjusting dose down due to the TSH. They seem to believe that a low TSH means we have become hypERthyroid but that is not the case if we're hypO.
I think u need to go see a Dr that treats thyroid problem s. If u feel u have a lump. And ur Dr has done test s scans . then she or he does know what's really going on. I had those s problems and lose my thyroid s to CANCER. Gone thur the radio treatments. And every 6 months bloodwork to check for cancer cells.Then I find another lump and turns out to b a rare tumor growing. So I had to go under the knife again. So I been watched closer by my Dr and my thyroid Dr.
Yes but go to a different doctor. The one you saw should have offered you treatment the first time they saw you. You’re not imagining any of this and it’s likely not the peri menopause stress etc even once you start meds it can take two years they say to get right so start soon. X
You say you don't want to have a syndrome, well none of us do, but if you were diabetic, you'd take insulin, so do go back to the doctor with the very good information you have been given.
Which brand of Thyroxine are you on. I can't take Teva or North Star as the fillers give me bad reactions, hair loss, muscle aches, swollen joints, absolutely no energy. I now take MercuryPharma and always double check that I have been given that brand. When I saw the Dr about my swollen joints in my hands she basically told me to get on with it as it was an osteoarthritis flare up. Hope you get this sorted.
Hi - I am not on any medication because my Dr told me in March that this was probably early onset of thyroid disease of some kind but to monitor it and see how it goes. Because my TSH level has not gone above 10 and has in fact gone down recently she does not think we need to do anything. To be fair to my Dr I don't think I have explained all my symptoms because I keep putting them down to other things.
I would like to say going would be helpful but I have been going back for 30years. Still got all the same problems as I had all those years ago 18 months ago a new GP actually sent me to see an endo have not faired much better there when you are told to go back in 3 months and 12 months later I an still awaiting an appointment this is with many calls to the secretary. I have given up on ever feeling well
Hi just want to add one thing about acid reflux - GP may prescribe a proton pump inhibitor e.g Lanzoprazole which effectively stops your stomach producing acid. However, with Hashimotos often the problem is LOW stomach acid which can also result in acid reflux. This happened to me and I’ve found either drinking apple cider vinegar or as gummies (which are great) helps control this.
Thank you - that's really interesting. I initially had acid reflux following a course of painkillers but now I don't know why I get it. I have had an endoscopy to check because of it constantly recurring and there were no issues. However I am now wondering if the feeling of lumpiness in my throat and cough/hoarse throat were thyroid related and not acid reflux at all.
The acid reflux can cause hoarseness as acid is continually coming into the throat, even at night when your asleep. You can easily test at home whether it is low stomach acid - google this 😊
It is a name used to describe a whole range of sweets and sweet-like products. Think wine gum or fruit gum.
A variety of substances are used to make them - such as pectin or gelatin. Usually have some sort of sweetener (possibly one or more sugars, artificial sweeteners). And in a supplement sense, the active ingredients - and colours and flavours.
As Helvella says - they’re like little jelly sweets but the ones I mean are made from apple cider vinegar and often a nicer way of taking this than drinking it 😊
Ah yes I have taken apple cider vinegar before but didn't realise you could get it in this form! Much easier!
My GP is a good guy, whenever, I've had a test that looks a bit unexpected and I've been concerned he has reminded me it's just one sample that might be affected by anything and has arranged a new test just to be sure. I think this is reasonable if you have symptoms and a previously over range TSH. But in the end you are more than a number and symptoms matter. If you feel unwell ask at what point a treatment trial would be considered.
That is a good point. My doctor knows me well. I have decided to put it all in a letter because I think I can ensure I have remembered everything and can lay it out clearly, and ask her if she can explain the results and symptoms more or ask me in for a further appointment. Thank you for taking the time to reply.
I have taken synthroid all my life pretty much and levels were always in normal range. Til, menopause. My levels were off when going thru menopause and still after 8 yrs they r off. Can’t quite seem to get right dosage. Menopause in itself causes a few of ur symptoms. I also have PA and was diagnosed during menopause.
Read my story on my profile page. I was told I was suffering from the menopause when infact it was thyroid disease. Don't be fobbed off by Doctors like I was because I became very ill.
Yes I mean your thyroid could be messed up with menopause or without it. Please see ur doctor. I was saying my thyroid was being treated and when menopause came along, it got messed up. PA is pernicious anemia which they found when going thru menopause lol.
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Should i wait o go private?
Should I try going on just T3
should I go private?
