These are my husband's most recent results: he has been diagnosed for a year. The GP says he's stable, but if this is as good as it gets, we are in trouble I think...
22nd December
Serum free T3 - 3.7 (4.00 - 6.80)
Serum ferritin - 51 (30.00 - 400.00)
Serum TSH - 6.76 (0.27 - 4.2)
Serum free T4 - 19.5 (12.00 - 22.00)
B12 - 448 (197.00 - 771.00)
Serum folate - 6.5 (he is not on folic acid) [3.90 - 20.00]
Erythrocyte Sedimentation rate - 2 (1.00 - 20.00)
Serum C reactive protein level - 0.6 (0.00 - 5.00)
Serum iron level - 12.4 (10.60 - 28.30)
Unsat iron binding capacity - 30.8 (20.00 - 66.00)
Serum TIBC - 43 (41.00 - 77.00)
Saturation iron binding capac - 29 (20.00 - 50.00)
Neutrophil count - 2.77 (2.00 - 7.50)
Lymphocyte - 1.79 (1.2 - 3.65)
Monocyte - 0.32 (0.20 - 1.00)
Eosinophil - 0.35 (0.00 - 0.40)
Basophil - 0.04 (0.00 - 0.10)
% neutrophils - 52.5
% lymphocytes - 34
% monocytes - 6.1
% eosinophils 6.6
% basophils - 0.8
total white cell count - 5.27 (3.00 - 10.00)
RBC - 4.6 (4.40 - 5.80)
Haemoglobin - 144 (130.00 - 170.00)
Haematocrit - 0.44 (0.37 - 0.50)
MCV - 95.7 (80.00 - 99.00)
MCH - 31.3 (27.00 - 33.50)
MCHC - 327 (320.00 - 360.00)
Red blood cell distribut width - 12.9 (11.50 - 15.00)
Platelet count - 192 (150.00 - 400.00)
Mean platelet volume - 10.7 (7.00 - 13.00)
Vit D3 - 79
I have been reading this site for a little while, so it was helpful in insisting on certain things being checked, which we perhaps wouldn't have requested otherwise.
GP says everything's normal, but I don't have much faith and he is unwell.
Do you have the reference ranges? Interpretation is impossible for most of the results without a range.
To add them, you can edit your post. To do that, click on the v in a little square at the bottom of your post. Click on Edit, and make the changes and additions you need to, and then click on Post again.
Even without a reference range your husband's TSH is clearly way over the range, and he is terribly under-treated. But we really need more info on the other results.
TSH 6.36 means your husband is very under medicated on his current dose. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.
B12 is sub optimal. I would supplement 1,000mcg methylcobalamin with a B Complex vitamin to boost folate.
Ferritin is optimal halfway though range and usually >130 for men. If your husband's is lower he could supplement iron with 1,000mcg vitamin C to aid absorption and minimise constipation.
VitD 79 is in the replete range 75 - 200.
I can't interpret your full blood count without the lab ref ranges (figures in brackets after results) but you can look up any abnormal results which will be flagged with ! in this link which will explain low and high evaluations labtestsonline.org/understa...
Ok, I just added the ranges to my post - but your answer is very helpful thank you. I will read the article and arm him with info for next GP appointment.
His TSH & T3 levels were marked with ! - and the GP discussed these with him, but said it was up to him what he wanted to do with the meds, he chose to remain at 100mcg levo, as he is scared of changing the dose as Consultant last year said it shouldn't be altered (although this was a whole year ago now).
I can't see any notes about the B12 or T4 though, they appear to be reported as within normal range.
Your husband is symptomatic because he is under medicated on 100mcg and needs a dose increase. Dose increases are usually in 25mcg increments every 6-8 weeks until TSH is 1.0 or lower. Your husband should have a follow up thyroid test 6-8 weeks after increasing Levothyroxine dose as a subsequent dose increase may be required. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after the blood draw.
FT3 is flagged because it is below range because he is under medicated.
FT4 and B12 are within normal range. FT4 is quite good due to stimulation from high TSH but this is not sustainable and FT4 will drop unless Levothyroxine dose is increased. B12 is optimal at the top of range, even over range.
Your husband must be feeling pretty rough after being on thyroid hormones for a year and not much of an improvement.
You both have learned a hard lesson and it is that few, very few, doctors know how best to interpret blood tests and patients' clinical symptoms. The guidelines have stated that the diagnosis must be on the TSH alone and many times patients remain undiagnosed or when diagnosed given too low a dose to enable them to recover and TSH probably near the top of the range rather than lower.
Its very frustrating, the more we have learnt about this over the last year, the more we realise GPs do not know about it, well, not in our practice anyway. Weirdly the Endocrinology Consultant he saw last year discharged him without much interest either, and yet he must have known it was going to be difficult - the advice was "get on with your life", which in a way was helpful, and we did for a bit, but there's only so much mind over matter one can practice.
Once diagnosed and given levothyroxine, we are surprised to find we still feel quite unwell. Doctor tells us we're on sufficient hormones but it's not until we find a forum that things become clearer and the reasons for not improving. I don't know how people manage if they've not got internet access.
Your husband's TSH is high. This would be surprising because his Free T4 is also quite high in range. But his below range Free T3 will be the cause. It is this that explains why he feels so ill.
Is your husband actually being treated? If he is, what is he taking and what dose is he on?
Assuming he is on Levo, he may feel better with the addition of some T3 to his treatment. You have a few options :
You could ask the GP to prescribe T3. Since he believes your husband is now "stable" he will likely say no.
You could ask for a referral to an endocrinologist. Assuming the GP says yes, there could be a wait of months. And there is no guarantee that T3 will be prescribed.
You could go private. But there are no guarantees that a private doctor will act or think in any way differently to a GP.
Or your husband could self-medicate with either T3 added to his Levo, or could try NDT, or could try T3 only.
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Iron : Your husband's serum iron is very low in range, as is his UIBC, TIBC, and his iron saturation. And his ferritin. Low iron is exhausting and can be painful. Your husband needs iron supplements.
You can buy prescription-strength iron supplements in the UK without a prescription, either online or from pharmacies (if the pharmacist agrees). Some pharmacies will quibble about selling without prescription but I've bought without any problems from Tesco Pharmacy and from Lloyds. Shop around if you have problems. If you get asked why you need it just say you were told you to buy your own.
In any iron supplement the important thing is how much pure iron it contains.
Ferrous Fumarate 210mg in a box of 84 pills. This contains 69mg of elemental (pure) iron per tablet. For low iron the dose is one tablet, two or three times a day. Don't take more than three because this would be the maximum safe dose i.e. about 207mg pure iron per day.
Ferrous Sulfate (sulphate) - has roughly the same amount of iron as Ferrous Fumarate 210mg (FF).
Ferrous gluconate - has roughly half the iron content of FF.
Ferrous or Iron Bisglycinate - has roughly 20mg - 25mg of iron per pill.
With each dose of iron, also take Vitamin C 500mg - 12000mg. Iron supplements cause constipation in many people, Vitamin C does the reverse. Adjust the dose of Vitamin C to "keep things comfortable". Vitamin C also helps the body to absorb iron.
Iron supplements must be taken at least 4 hours away from Levo or other thyroid hormones.
If you are happy to pay for testing with a finger-prick test, then this is the cheapest one I know of that is worth doing, and you don't have to beg for testing from a doctor :
I would suggest doing a test after 2 - 3 months then again 2 - 3 months after that. Then adjust frequency of testing according to how well iron is absorbed.
Some people can fix low levels in 6 - 9 months, some people might take a couple of years, some people never manage to raise levels.
One doctor, now deceased, tried to co-operate with the BTA and RCoP but none would attend the Conference he had arranged to discuss the 'parlous' situation of patients who were undiagnosed or not given sufficient thyroid hormones. None were at all interested that a Virologist should want to discuss the guidelines and one by one refused, the last the night before. The virologist was getting patients from all over the country as he and Dr Peatfield were the last of the 'old school' i.e. trained in clinical symptoms when students. For his temerity for suggesting the guidelines were not to a standard, he was then pursued by the GMC due to 'complaints' and I doubt it was patients who did so, as there were 2,500 testimonials to the GMC saying the virologist saved their lives. Unfortunately no-one is trained in clinical symptoms anymore - only the blood test gives the results and sometimes it never rises sufficiently (to 10 in the UK) but the person suffers and given other medications instead of hormones.
If your husband request GP to refer him to endocrinologist in writing, I understand that GP should refer him. He must explain clearly why he needs to be referred, highlighting his high level of TSH, his symptoms and length of time of misery....
Perhaps some other members of the Forum will think the same about letter writing to ask for referral? I have done that quite a few times. Letters written to a GP must be filed in your medical records.
If your husband hasautoimmune thyroiditis (Hashimoto's) there is no cure but many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Yes, he is 100% gluten free already, and we have learnt the hard way about this - there are NO treats to be had, even at Christmas - he was so ill afterwards this year with one yorkshire pudding and a beer - never again.
'Stable' is one of those words - like 'nice' and 'fine' - which don't really mean very much. They certainly don't mean that you feel well. You can be 'stable' with with a TSH of 10, if it stays up there, test after test (that's all stable means, it doesn't budge), or you can be 'stable' with a TSH of 0.10. But you would probably feel better with the latter, and rather ill with the former.
'Stable' is one of those words they use when they don't really know what they're talking about, but feel the need to say something.
Before levothyroxine and blood tests were introduced, patients were diagnosed according to their clinical symptoms and prescribed natural dessicated thyroid hormones until they were well. So doctors have lost the inability to diagnose on clinical symptoms which I think are more important than a blood test, although a blood test can have its uses. TSH varies throughout the day, highest early a.m. and dropping. However, the doctors have been told to only go by the TSH level which doesn't bode well for many of us. Tick off symptoms and I doubt your GP will be aware of half a dozen or any at all The fact that GP thinks your husband is 'stable' with a TSH of nearly 8 proves he is not at all knowledgeable. TSH of 1 or lower is required but sometimes members need an alternative to levothyroxine.
Not only is he undermedicated but maybe not converting very well. Even on this paltry dose of levo his t4 is high in range relative to everything else. A bit of t3 may well help him feel a bit better.
Do you know if he took his levo before the blood draw? Is he taking it well away from food and drink?
chr155y said the GP discussed results and said it was up to the patient whether he wanted to up the dose. I don't think it is at all fair to leave it entirely up to a ( newly diagnosed) patient but it hardly makes the doctor 'an idiot'. Many of us would welcome such a response. Sounds to me like she doesn't know the next step -that doesn't make her 'an idiot' but lacking in knowledge or confidence.
Gps are human. They are not all uncaring monsters and they are not all idiots. Many of us have had bad experiences with their attitude - not to speak of endos. Some are arrogant in the extreme and sadly a good many will not admit to not knowing. That it seems to me is the primary problem and that is a cultural problem: the culture of medicine and healthcare. I think there can be reasons for not knowing. This GP seems to be aware she doesn't know and has handed the freedom/ responsibility to her patient.
Life in all its colours is very much more complex than black and white, don't you think?
Perhaps you expect too much from GPs. By definition they do not - and cannot - know ''every facet of their job'' if their job is the human body and all that ails it. They are the first port of call. When they don't know they can refer the patient. I believe in this case, this is what has happened. Problems occur because GPs don't refer or when they do refer the endo is unhelpful or worse. And that is another story altogether.
How do you equate being undiagnosed with hypothyroidism? For years? Before the blood tests doctors knew the clinical symptoms and we began on NDT until symptoms resolved.
No-one ever did a blood test to see if I was hypothyroid but I had quite a few other diagnosis for things I didn't have. Even had an op to be told a few days later, that what was supposed to be removed from my throat - I didn't have at all! After an overnight stay in the A&E cardiac dept, discharged as 'probably viral with a high cholesterol'. A week later thanks to a first aider, I had a TSH of 100 and was extremely unwell by this time.
Doctors provide doses which are too low in order to keep TSH in range (never mind about never testing FT4 or FT3). They will prescribe other medications for the symptoms and patient doesn't improve. They adjust hormones according to the TSH and someone who doesn't have access to internet will never be well. Of course, thousands do get on o.k. with levothyroxine but I'm not one.
Hi Shaws. I agree with everything you say and I too suffered for a long, long time ( including 4 miscarriages. FOUR!) but nobody seemed to want to investigate. At all. Even when the bloods signified something was not right. I try not to think about it as it still makes me furious. And very sad.
Notice my comments related to the culture of medicine. I could be more specific and say the culture of modern medicine which is not the kind of medicine or doctoring that our grandparents knew. Mind you, our great grandparents probably knew very little about medicine...unless they could afford to pay for it.
I will not accept however that *every* GP is an idiot or that they should be experts in all they see. They aren't. By definition. I think the Forum is a better place when these remarks are tempered. The poster in question received a lot of good advice from members. As far I understood it the GP in question had not declined to help or reduced medication or said there was nothing wrong. She passed the responsibility of increasing the dose on to the patient - not particularly helpful I agree.
But nor is it helpful to make harsh, sweeping statements of the kind I objected to.
Particularly when the evidence doesn't support it Sweeping statements are the kinds of things we as patients have suffered for years( ''it's just a woman's problem; ''you're depressed''; ''it's your age'') and we know how that feels.
I agree. We resent the blanket statements made about us while making such statements about others, and it doesn't help us go forward at all. Saying someone is an idiot, while it may not be untrue, doesn't address or resolve the essential problem in the same way as, say, deciding to argue your case w the Toft book or deciding to change doctors.
By the same token I understand the extreme sense of hopelessness, frustration and isolation one feels at the hands of a doctor who is cold, unhelpful and/or contemptuous, not to mention the extra burden of remaining ill w no end in sight.
I guess I'm saying I understand the desire to blow off steam here where we can say what we want about doctors in a way we can't when we're in the surgery, but I agree it is unhelpful. And of course not every doctor is an idiot.
We may also want to think about how it makes someone feel when we tell them, as if they had no critical faculties themselves, that someone they depend on is an idiot, as opposed to, say, explaining what they got wrong or suggesting a constructive plan.
How can that be good? FT3 in under range. TSH is over,. Ferritin, folate, B12 and iron are poor. D3 could be better. But very little inflammation (CRP) which is great. He's not converting T4 to T3 either because of a a problem with DIO2 gene or because the vits and minerals are too low. He really needs some T3 and/or an increase in levo - probably both.
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