I'm due to see a private endocrinologist on Friday but can anyone help me make sense of my latest results before I go to see her? I haven't seen an endo since having my thyroid removed apart from being discharged with a thanks very much but you are not our problem anymore and posted a few weeks ago before I had print outs of my bloods. I'd like to know whether it is important to be at the higher end of normal as appose to the lower end to help me feel more human again?
T3 2.38 (2.89-4.88)
T4 13.7 (9-19)
TSH 1.45 (0.40-5.00)
VIT D 41.7 (>50)
B12 232 (150-620)
Folate 6.9 (3.1-19.9)
Ferrittin 27 (15-200)
Written by
Cath1978
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My heart drops when I note a member has had her thyroid gland removed and 'sort of' left to get on with it (it seems to me) despite her/him having clinical symptoms and not feeling very well indeed.
I am not medically qualified but had undiagnosed hypothyroidism.
The aim for the TSH (thyroid stimulating hormone - which is from the pituitary gland - not the thyroid gland). It should be 1 or below if we are to feel reasonably well. Free T4 and Free T3 should be in the upper part of the ranges but rarely tested. They may do T4 or T3 but FT4 and FT3 are more informative.
All of your other results look too low and I'm sure you don't feel well.
I believe that anyone who has had their thyroid gland removed should be given a combination of T4 and T3. T4 (levothyroxine) is an inactive hormone and it has to convert to T3 which is the Active thyroid hormone which is needed in our millions of T3 receptor cells. Many seem to be able to do this but some cannot and need a combination (at the very least) of T4/T3.
Thanks, the results are free T3&4 and my GP has been amazing but the rest of the NHS have had be on a roundabout passing me from department to department with no one taking responsibility for my illness.
I think when they removed my thyroid they thought all my symptoms would disappear however I’m still feeling awful unable to function like I used to and for some reason nobody apart from my doctor cares!
I’ve got an appointment with an Endocrinologist on Friday who has been highly recommended so hopefully she will help me.
Your frees are too low and unless they get higher you wont feel very well at all. I should also state I'm not medically qualified - just had undiagnosed hypo which I had to diagnose myself.
I am sure your appointment will go well. I am going to remove your doctor's name as we don't put names on the forum (to protect them).
It is not so much 'bad press' but are pursued if they don't follow guidelines.
We know of one very good doctor (read Tears Behind Closed Doors) who was pursued by the authorities for doing as he was taught as a medical student and he couldn't take the strain so resigned his Licences but can (although he's been quite unwell for the past number of months) still consult and advise.
We also had another doctor who was pursued quite a number of times because he treated patients by their symptoms - he was a virologist - and called before the GMC. However, maybe the 10,000 testimonials the GMC had received about Dr Skinner meant that he was not found to be harming patients. It was an enormous strain so that's why so many doctors are afraid to use their own initiatives. Dr S has now died and is sadly missed by his staff who loved him and every day was a fun day for them at work.
It is very important to have your level in the right place within the range. TSH when being on thyroid hormone replacement, should be 1 or under - and if you had your thyroid removed dut to cancer, TSH should be suppressed. So, your TSH is too high.
FT4 should be at least over mid-range - yours is just under - and high enough to provide you with enough T3 if you are on T4 monotherapy. If you are taking T3, then FT4 will be lower.
FT3 should be somewhere near the top of the range, depending on where you feel well - T3 needs are a very individual thing. But, your is below range! So, that really isn't good enough for anybody.
Unfortunately, doctors don't understand this. They think that anywhere in range will do - and just a little bit under-range, well, that can't hurt, can it! You might have to insist that your FT3 is much too low. And it's low T3 that causes symptoms.
I’m only on Levothyroxine. Originally I was on 75mg for just over a year then it was increased to 100mg in November. My FT4 levels stayed the same even with the increase and now I’ve been put up to 125mg at the start of January.
My thyroid was removed due to a possible thyroid storm and being very hyperthyroid. My levels would not come down and my heart was taking quite a beating so they told me my best option was to have it removed. I’m not too sure anymore if this was the right advise!
Did you have any antibodies tested at that time, to help with the diagnosis?
125 is not huge dose, so you'll probably need another increase after that. When are you going back for retests? Once you get your TSH down to a more reasonable level, you could possibly find that you have a conversion problem.
At the time I had blacked out at the wheel of my car and wrote it off, I’d been feeling unwell for 8 months previous to this and nothing at the time was tested apart from my heart. It was only a few weeks later when the doctor did some bloods that he found me to be severely hyperthyroid. It then took a further 3 months to get in with an endo!
I do remember having antibodies and only recently had them show up in a test again and they were still high... not quite sure how that works as I’ve no thyroid anymore. I was only told they were thyroid disease antibodies and I vaguely remember being told I had Graves’ disease but with a brain turning to mush it’s hard to keep up sometimes 🙈🤯
So, they were TRAB or TSI antibodies? Just saying 'thyroid disease antibodies' is very vague. lol As if there were only one thyroid disease! It's always a good idea to get a print-out of your results so that you know exactly what is going on. I don't see how you can give informed consent to a surgical intervention without even seeing your results. Just being told 'oh, this or that is high or low' doesn't really cut it, does it, because it's difficult to concentrate at the time. We need time to think about it, and consider the results at our leisure. There's too much rail-roading of people into having bits removed in haste. I know, I've also been a victim of surgeons eager to wield the knife without due consideration. Not my thyroid, but still. ;(
Anyway, if they were really Grave's antibodies, then yes, they would still be there. They don't go away, even if the thyroid is removed.
It would be helpful if you’d make a list of the symptoms and signs of your condition, ready for the consultation. For example, pulse rate, temperature and your energy level etc... to convey how much your day to day living is affected.
Not at all, I’ve been messed around so much that I’m now a master at helping consultants out before I see them as not to waste valuable appointment time 😘
We Hypo patients need our nutrient levels to be optimal for thyroid hormone to work.
VIT D 41.7 (>50)
I'm pretty certain that the unit of measurement here is nmol/L. The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level between 100-150nmol/L. I doubt whether you will be prescribed D3, and to be honest you may be better off buying your own.
With your current level, to reach the recommended level, the Vit D Council recommends supplementing with 4,900iu D3 daily (nearest is 5,000iu). Retest after 3 months and when you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
B12 232 (150-620)
Unit of measurement again is important, this is either ng/L, pg/ml or pmol/L. Whichever it is your level is rather low.
I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... If so you should list them to discuss with your GP and ask for further testing for B12 deficiency/pernicious anaemia. People with higher levels than yours have needed B12 injections, doctors should go by symptoms not numbers.
And 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."
So if you have no signs of B12 deficiency then you could supplement with sublingual methylcobalamin to raise your level.
Folate 6.9 (3.1-19.9)
This is low, recommended is at least half way through range (11.5+ with that range). Again, not low enough for GP to prescribe, but you can raise your level by eating folate rich foods and supplementing with a good B Complex containing 400mcg methylfolate (not folic acid). Recommended brands - Thorne Basic B, Igennus Super B.
Don't start supplementing with a B Complex before further testing of B12 for deficiency/PA and supplementation or injections started, if necessary, as folate (folic acid) masks signs of B12 deficiency.
Ferrittin 27 (15-200)
For thyroid hormone to work (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range. You could ask your GP for a full blood count and an iron panel which would show if there's any anaemia.
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 apjcn.nhri.org.tw/server/in...
Your thyroid results have already been commented on, but I would reiterate that the aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.
Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, wrote an article in Pulse magazine, the magazine for doctors, which said:
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor if you have any problems with asking for an increase in dose.
Wow that’s a really interesting response, thank you so much. It’s all a minefield and so difficult to get your head around when the brain isn’t functioning properly and you are so exhausted with trying to find answers.
The B12 was ng/L and vit D was nmol/L
I have many of the symptoms of B12 deficiency too!
OK, so ng/L is the same as pg/ml, so according to the quote from the book
"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".
your level of 232ng/L (pg/ml) is way too low. As you have symptoms of B12 deficiency, ask for further testing, don't be fobbed off by being told your level is within range, as I said doctors should go by symptoms, not numbers.
As Vit D is nmol/L then it's OK to go ahead with the dose of supplement suggested above.
You must feel really cr*ppy with such a low T3. For the life of me I cannot understand why someone who has no thyroid isn’t put on combination therapy immediately with T4 and T3. My thyroid may be pretty shrivelled, but there’s an outside chance it might squeeze a bit of T3 out every now and again along with a bit of T4. You have no chance.
You sound well prepared. Insist they treat the patient, not the blood test. Focus on symptoms if you want to push for a trial of T3 as per the guidelines (you’ll need a copy with you.) Folks on here have variable outcomes with endos. I hope you get a good one with an open mind. Good luck. Let us know how it goes. 🤸🏿♀️ #fightforyourthyroid (or lack of thyroid!)
I posted to you last month and now understand that you think Graves was mentioned prior to thyroidectomy. Sorry to read how your diagnosis came about, scary to say the least.
OK apart from the books already suggested there is one other :-
Barbara S Lougheed - Tired Thyroid - from hyper to hypo to healing :- debunks the TSH over reliance in mainstream doctoring - Graves patients have TSI antibodies that " sit on " the TSH continually stimulating it.
This gives a false low TSH read, making us appear suppressed on a much lower dose of thyroid replacement than people without the Graves antibody.
That's why you went overactive in the first instance, your antibodies were attacking your thyroid function, and took over the control of your TSH production.
There's probably some genetic predisposition as to why you now have this disease.It can skip a generation and maybe there was a distant uncle, aunt or cousin.
I read it can also " come on " through a shock to the system like death or a car accident.
In my case I was physically stood over and verbally abused by a work colleague, whom I now know, wanted my job. There were no witnesses, he made sure of that. I had no help from my company even though I reported the incident. Five months latter I was diagnosed with Graves Disease.
I knew nothing in 2005 and have only started joining up my dots these past two years.
So, just to say a fully functioning thyroid would give you about !00 T4 + 10 T3 daily -
Some people are able to get by on monotherapy with T4 - some cannot -
I believe that if you have lost this major gland through medical intervention, it should be a given that both these hormones be put on your prescription should T4 "not do it " for you.
There is also the old fashioned tried and tested NDT replacement - but again finding a doctor on the Nhs prepared to help you with this is virtually impossible.
I am now self medicating with NDT and doing OK - long haul, but know I will get there.
SeasideSusie has given you good advice re. vitamin levels. It can take about 6 months after beginning to supplement to begin to feel the benefits and a year to really feel the difference. Vitamins take a while to work as your body needs time to rebuild so take the advice, get started in getting better. I can tell you from experience it makes all the difference.
You are unlikely to get such good advice from any Endo, they are only concerned about numbers being anywhere in NHS range and know very little about nutrition it seems. I've seen tons of posts on here where people have had very unsatisfactory Endo advice. Thyroid disease seems to knock out vitamin absorption or utilisation so it's definitely worth optimising your nutritional and vitamin levels.
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