My sister has been ill for years she is on 100 levo and is told her results are perfect. She is prescribed anti depressants, anti anxiety tablets, blood pressure tablets and a couple of others but she's not even sure what they are for.
TSH. 4.31 0.34 - 5.60
T4. 10.6 7.70 - 15.10
B12 352 no range
Vit d 64 no range
Ferritin 33 15 - 310
She has very bad health anxiety and thinks she is dying. Our mum died of motor neuron disease so is paronoid about her muscle weakness and every twitch. I explained her symptoms can be explained by her low results and I am going to her doctor with her to explain this to him. She is also 50 and menopausal which I am sure doesn't help matters. She is not on any hrt.
I would appreciate any links and advise to help me put forward a case.
Many thanks in advance.
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Hele1
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Then her GP hasn't got much of a clue about treating hypothyroidism. Her TSH is far too high for a treated hypo patient. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
She needs an increase in her dose of Levo, 25mcg immediately, retesting 6 weeks later, another increase of 25mcg. Repeat until levels are where they need to be for her to feel well.
To support her request for an increase in dose, use the following:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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 her doctor.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .......... This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L .......... Likely under Replacement
For a full picture, TSH and FT4 tests aren't enough. FT3 is necessary, done at the same time as FT4, so you can see if T4 is converting to T3 well enough, T3 being the active hormone that every cell in our bodies need.
Have thyroid antibodies been tested - Thyroid Peroxidase and Thyroglobulin?
B12 352 ng/L (this is the same as pg/ml) no range
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."
She could supplement with some sublingual melthylcobalamin along with a B complex to balance all the B Vitamins, or just a good B Complex containing methylcobalamin and methylfolate (eg Thorne Basic B, Igennus Super B).
Folate: 15.3 (3.8-25)
This is pretty good, it's recommended that folate is at least half way through range, this is 54%.
Vit d 64nmol/L (25.6ng/ml) no range
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). If she wanted to improve her level, the Vit D Council suggests to raise this level to the recommended level then supplement with 3,700iu D3 daily.
When she's reached the recommended level then she'll need a maintenance dose to keep it there, 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).
Ferritin 33 15 - 310
This is very low and it's recommended to be half way through range, with a minimum of 70 for thyroid hormone to work properly. It's not really low enough for most doctors to prescribe iron tablets but she could ask for an iron panel to check her serum iron, TIBC and % saturation.
She can help raise her 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
She probably wouldn't need the antidepressants if she was optimally medicated for her thyroid, but they can't just be stopped, they have to be reduced gradually. Anxiety is a symptom of hypothyroidism so again if optimally medicated there may be no need for these. I think she needs to find out what any others are for, I certainly wouldn't be taking anything prescribed unless I knew why.
Thanks so much Susie. I shall show him your reply and print of the links for him. I think the other tablets are to help her sleep as she has to take them at night (another symptom🙄)
She is requesting online access and I’ll see if antibodies have ever been done.
My other question is how can I convince him to test the T3? Are her lingering symptoms a good enough reason for him and the labs to do it?
My other question is how can I convince him to test the T3?
Many doctors have no understanding of T3 or the FT3 test. Even if the GP agrees to ask for FT3 to be tested, the decision lies with the lab and they may test if TSH is suppressed (my GP's lab does) but not all do. Many members do private testing for anything the GP can't or wont test for.
As vitamins have been tested, one of two thyroid panels can be done with one of our recommended labs, who do fingerprick tests, or venous blood draw if preferred (extra cost).
The tests are
TSH - FT4 - FT3 - Blue Horizon Thyroid Check Plus Three or Medichecks Thyroid Monitoring
Thanks very much for your replies. I will also mention the ferritin. She doesn’t believe that how she feels is down to low vitamins and under treatment and thinks there’s something dangerously wrong with her. Even the high blood pressure can be another hypo symptom?
The problem now is how to get her off all these other meds as there will probably be withdrawal symptoms which may mask the benefits of the thyroxin increase.
Strength and Sympathy for your sister . Do you know your sisters latest FT4 FT3 TSH values are ? You mentioned your sister is on T4 only . Did your sister request for some T3 . Our brain and hearts muscles have receptor sights for T3 . Adding some T3 would be very helpful for your sister . You would need an experienced Dr/Endo who *Gets It* to work with your sister .
Nutrients are very important like vitamin "D"/K2 , B-Complex , B-12/folate , Iron if low , magnesium , Vitamin "C" , Celtic Sea Salt for adrenals/Electrolytes .
Going Gluten dairy sugar soy free is very beneficial for many .
Thanks so much for your support I will show her and her doctors these replies. She's had no other thyroid tests done. She was told to stop taking iron supplements even though her ferritin is only 33. I assumed perhaps they had done an iron panel but they hadn't, they based this on the fact she has high red blood cells and high haemoglobin. Nowhere can I find that this means high iron? I need to do a lot of investigating before our appointment on Thursday 🤔
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