Hi a good friend of mine has finally been diagnosed with hypothyroidism her mother has it and told her for years to get it tested but she got the usual NHS wall. When she did get tested this spring her TSH was in the 10 region so she got treatment 50mcg starter dose rapidly raised to 100 then 150mcg. She says she does not feel Much different but has lost weight (she was far too fat for her height and build) she has problems sleeping. I think she seems much chirpier her voice is still very flat and robotic sounding.
A different locum then cut her Levo to 125 saying it was because of her liver tests being abnormal. All the literature I have seen says the higher the thyroid hormones the better for liver disease i.e. Top of range. Her latest test show TSH 0.1 and free T4 too high (out of range) she has no symptoms of hyperthyroidism. Her vitamin d is deficient but they are not doing anything saying she can buy her own vit d it is not serious enough to warrant a prescription - how tight can the NHS get either she is deficient and needs supplementation or she does not and it should be given to her as a prescription - poor thing just scrapes by on a series of temporary part time jobs.
Should her dose have been reduced? How much vit d would be advisable?
These are her results
Sorry they are blurry I cannot add three photos only one ☹️
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TSH110
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I don't know about anyone else bit I am on my tablet and the writing in the image is too small for me to read.
What is her Vit D result?
Besides Vit D, were there any other vitamins and minerals tested ie B12, folate and ferritin? All need to be optimal for us Hypos and for thyroid hormone to work properly.
It is: 63.8 (70-150) with a typed note saying insufficient
Then scrawled handwriting saying
"Slightly low vitamin d. We recommend buying an over the counter supplement. (not low enough to need a prescription)"
It is disgusting she should get it on prescription which is free. She struggles to make ends meet doing any little job she can and is entitled to free prescriptions. That figure is far too low.
TSH110 Well, she's not going to get it on prescription, the guidelines are probably being followed to the letter, and if the GP didn't follow the guidelines there may be consequences for him. She is not severely deficient where she would be prescribed loading doses, she is just a bit below the replete range. Over the counter Vit D isn't expensive - for example - a year's worth of D3 softgels at a dose that would be too high for your friend once she reached the recommended level (so they would last well over a year in that case) is £13.95 bodykind.com/product/2463-b... With the NHS in the state that it's in, personally I think it's fairly reasonable in this case to suggest OTC supplements. I think the money that would be spent on prescribing D3 supplements for this level would be better spent on prescribing T3 (and other medications) to those people who desperately need it and are having it taken away due to how expensive it is.
The recommended level, according to the Vit D Council, is 100-150nmol/L. With her level at 63.8 she could take 5000iu daily for 6-8 weeks then retest, and if she has reached the recommended level she could take 5000iu alternate days. When supplementing, it's recommended to retest once or twice a year to keep within the recommended range. If the GP wont do this then she can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
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.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
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
I can just about see the thyroid results now I'm on my PC, and I think her FT4 is 26.5 (9-23) with a TSH of <0.01. According to the results, that would make the GP reduce her dose. However, she may be interested in the article in the doctor's magazine Pulse, written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, which states
"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)."
If she would like a copy of the article, email louise.roberts@thyroiduk.org , print it and highlight question 6 to show the GP.
So she should ask for FT3 to be tested to see whether she is actually overmedicated. If FT3 is in range and she feels well with those levels, then she isn't overmedicated, but convincing doctors of that is not easy.
Bear in mind that continuing with a high dose of Levo with continually over range FT4 can actually result in reverse T3 being made instead of FT3. This happened to me.
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It would be a good idea for the other vitamins and minerals to be tested, many of us Hypos are low or deficient in them and they need to be optimal for thyroid hormone to work properly and good conversion of T4 to T3 to take place. If GP won do the FT3 and the vitamins and minerals, she can do a fingerprick test with Blue Horizon or Medichecks that covers everything - Blue Horizon Thyroid Plus Eleven or Medichecks Thyroid Check Ultravit.
Thanks for your very detailed reply and the reassurance that her vitamin d levels are not actually very serious. I felt like total pants when mine was Insufficient and I did get vit D3 on repeat prescription from my GP on his initiation, so was shocked at those comments on her lab results, given my GP's reaction. Plus the evergrowing research showing how key vitamin D is to many aspects of health it strikes me that leaving people with deficiencies is storing up a lot of ill health for the future that will be a lot more expensive to deal with in the long run for society in all its ramifications, pbut prevention and early intervention seems no longer to be a valued aspect of medical care worth pursuing and is left to the vagueareis of individual responsibility. So we must agree to differ on that gnarly conundrum.
My friend says she does not feel any different from when her TSH was around 10! But she does seem a bit more energetic and perky. They did reduce her dose after those results i think from 150 to 125mcg levo. I will let her know to get the vitamins you recommend, and mention the info about her results and the Toft article - if she feels things are going downhill she can take it in and see if they can up her dose again. Oddly she does not seem very aware of her symptoms or how they are affecting her like she has no exactitude in her self analysis. This was how I was when I was very overt just stumbling through each moment, but not once optimisation was on the horizon, her voice is quite strange, robotic and monotone but better than it was with a bit more intonation. I sounded like a darlek but again only when I was extremely overt and that symptom rapidly resolved on a small dose of Levo. I suppose everyone differs and she did carry on working throughout so is pretty determined in her own way. Her mum is hypo too - told her for years to get tested but like my mum she was in total denial.
I do agree with you TSH110 about how sorting out inadequate levels can prevent future expense dealing with the resulting ill health of ignoring them. But with the ever decreasing pot of money available within the NHS, what is available has to be spent on saving lives and giving people the foundations for living as well as they can with whatever debilitating conditions they may suffer.
At least your friend was given advice about improving her level (and many have been in the severely deficient catergory and been prescribed a measly 800iu daily or even had it ignored) and with the low cost of self supplementing D3 I think it's reasonable to suggest that a patient with that level buys their own. She can get more than a year's worth of D3 for £13.95 - see how much it would cost the NHS -
It's another case of the NHS being overcharged for what should be a cheap item -
SeasideSusie I see what you are saying. I am just very old fashioned and think the whole national health system is heading for the nightmare that is what passes for health care in the USA. Expensive, woefully inadequate and highly devisive. Already these seeds have been sown here. I still believe a decent NHS could exist had we the will or commitment to making it work. There we go I am from another era whose principles no longer hold favour or have the support of the majority. But it won't stop me believing in it as a better way for the majority. May be it will open up the way for more choices in thyroid treatment but I am not holding my breath. However, I do agree that my friend has had a pretty good response from the NHS in sorting out her hypothyrodism. She only had the tests at the turn of last year and in less than 6 months got very much back on track. Her locum GP did seem very on the ball which was reassuring. But each time now she gets a different locum GP as that one left. I wonder if the differences depend on where they have been trained.
I'm very probably from the same generation as yourself TSH110. We had family doctors, they knew your parents, you as a baby, you growing up and quite likely your children too. You sat and waited your turn, they had time, they looked at you and could tell if you didn't look well. Investigated. Nowadays we go to a doctor who may or may not have seen us before, doesn't remember us if they did, doesn't even look at your notes. However ill you look, you have to try and convince them you're not well. Referalls to specialists denied. 'Come back if you don't feel any better in a few weeks'!!!
The current NHS is not the vision Nye Bevan had.
Too many chiefs and not enough indians! Managers in their offices making decisions and the doctors at grass roots level finding it almost impossible to keep to targets, etc.
I'm sure emergency medicine is as good as always but very thing else is going down the drain. We did have an NHS service that was the envy of the world once upon a time.
Like you, I also believe we're heading for a US style health care system. Heaven help us!
And I believe big pharma has a lot to do with what's happening to our health care.
The government is being ripped off over the price of medicines yet does nothing about it. Doesn't matter which party is in.
And for now, as things stand financially with the NHS, considering the post code lottery for certain treatments - cancer and so on - I'm happy to buy my supplements and the money saved be put towards the treatment desperately needed to keep someone alive.
My late husband had treatment for a rare cancer, I live in Wales. He was told there was no cure, only treatment and was told his maximum life expectancy. He died 6 years ago. Someone else over the border, treated in England, had the same cancer, had a different treatment, he is still alive now, apparently fit and well. What I can't understand is that we are a 'United Kingdom', yet the treatment differs depending on which 'nation' you live in. Certainly not a very united National Health Service.
Your friend has been fortunate so far in that she hasn't waited years for something to be done about her hypothyroidism
You are so right and I am very sorry about your husbandthat is very tragic it brings real poignancy to the phase post code lottery. I do buy my own vit D3 and cetrabeneven though I can get them on prescription. I rarely need anything else on NDT.
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