New to the site and would really appreciate any advice
My husband was diagnosed with Hyperthyroidism over 12 years ago. He requested a blood test as the last blood test was a year ago. For the last two years has been on leverthyroxine 100 daily, with additional 25 on alternate days. When a copy of the blood test was collected last week from the receptionist, she noted the GP's comment on his notes in regard to the results "as well as could be expected in the circumstances"
Below is lab report
Serum free T4 above range25.4pmol/L[11.0-22.0 pl Please note new reference range for FreeT4from the 14th December2023,Above high reference limit.
TSH level 1.16mU/L [0.27-4.2]
Should we be concerned, as his fatigue levels have noticably increased.
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purplerunne
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Was he told cause of hyper? Was he treated with antithyroid or any further treatments?
100 & 125 mcg weekends in not a high dose for male.
Dr has looked at TSH and as this is in range they are not concerned he has high FT4. The FT4 is over range so often drs will reduce based on that.
Do you remember when the blood draw was taken for that test? If it was taken within a few hours of taking replacement it might show a high result.
TSH is a pituitary hormone which signals the thyroid to increase or lower production of new hormones. It can be unreliable & much better to go by thyroid hormones. unfortunately NHS only test FT4 and do not test the FT3, the active thyroid hormone.
The FT4 can be high but the body doesn’t always convert well. If FT3 low it can cause hypothyroid symtoms.
Many arrange private test to test FT3 & key nutrients.
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00 - fast overnight, avoid biotin 3 days before test. delay replacement until after draw.
See link for private companies with discounts with many packages & options.
So what was your husband actually diagnosed with and did his hyperthyroidism burn itself out, or did your husband have treatment, guessing either a thyroidectomy or RAI thyroid ablation or is he on long term Anti Thyroid drugs ?
Was test done as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Which brand Levo is 100mcg and 25mcg
Does he always get same brand levothyroxine at each prescription
Initially HYPERTHYROID
So what treatment did he have
Thyroidectomy or RAI ?
Now hypothyroid
Just testing TSH and Ft4 is inadequate, but all NHS typically offers
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Lower vitamin levels are also more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements is he taking ……if any?
Also VERY important to test TSH, Ft4 and Ft3 together
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
pennyannie PurpleNails SlowDragon typo in post HYPO (corrected in another post)
So your husband really needs to ask for a referral to Endo, above range fT4 isn't a good place to be and a full thyroid panel is needed to see his fT3 level
Has he had blood tests for ferritin, folate, B12 and Vit D?
So I would imagine your husband is now diagnosed Primary Hypothyroid and with no thyroid function of his own.
So a fully functioning working thyroid would be supporting him on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 x more powerful than T4.
T4 - Levothyroxine is a storage hormone and needs to be converted in the body into T3 the active hormone that runs the body and the thyroid 's job is to fully synchronise all the body''s requirements from ones physical ability and stamina through to ones emotional, mental, psychological and spiritual well being, and regulate ones inner central heating system and ones metabolism.
No thyroid hormone replacement works or converts well into T3 until the cornerstones of good health - ferritin, folate, B12 and vitamin D are up and maintained at optimal.
It is essential that once on thyroid hormone replacement that your husband is dosed and monitored on his T3 and T4 blood tests and not a TSH and an occasional T4 - as is generally all that happens in primary care.
Without a thyroid his Hypothalamus - Pituitary - Thyroid - feedback loop - the HPT axis - is down regulated as there is no thyroid is situ and this makes the TSH an even more unreliable measure of ' how well, or not ' he is on his current thyroid hormone replacement medication.
Some people can get by on T4 only.
Others find that at some point in time T4 seems to not work as well as it once did, and that by adding in a little T3 - probably at a similar level to that is own thyroid once gave him, they feel better and their T3/T4 hormonal balance is restored.
Some can't tolerate T4 - and need to take T3 only - Liothyronine - as you can live without T4 but you can't live without T3.
Whilst others find they feel better taking Natural Desiccated Thyroid which is the original treatment used successfully to treat hypothyroidism for over 100 years and is derived from pig thyroids which are dried and ground down into a powder, medically graded and then made up into tablets, referred to as grains or powder for capsules - and which contain all the same known hormones as that of the human thyroid gland.
Up until around 2000 all these treatment options were available on a NHS prescription from your doctor but due, mostly to costs, currently in primary your doctor can only prescribe T4 and you need a referral to an endocrinologist to assess your needs, and who may, or may not prescribe any other treatment option, due to hospital rules and guidelines and ICB/CCG financial constraint.
So it has become a bit of a post code lottery getting any further than your doctor - but first off, maybe talk to this doctor about his comments as they have upset you and you are very concerned as to your husbands reduced quality of life.
Obviously if you can afford to go privately there is a very different landscape and all treatment options are available -
Thyroid UK the charity who supports this forum holds a list of Private / NHS - endos and thyroid specialist - so maybe email admin@ thyroiduk.org - asking for the Patient to Patient Recommended List.
Ideally we first need to see a blood test to help you further understand your next best step -
TSH + T3 + T4 + inflammation, antibodies and the ferritin, folate, B12 and vitamin D run -
and so we need a Full Advanced Thyroid blood test - around 10/11 biomarkers from the 1 blood draw -
which must be a fasting blood test by around 9,00 am in the morning - with your husband taking his T4 for that day after the blood draw - so leaving around a 24 hour window from his last dose of T4.
T4 is a storage hormone - he'll be ok :
If your doctor can't run this full comprehensive blood test for you there are Private companies who can - and this was how I managed to get the information I needed to reclaim my health and well being some 6 years ago .
I'm with Graves Disease and post RAI thyroid ablation.
Thyroid UK - have a whole page listing various Private blood test companies -
I use Medichecks - as they cover my area with a nurse home visit option to draw my blood for me - so its a little more expensive - but once a year I see now as my body's MOT and it always works out cheaper than my car MOT !!!
I see ' speedyslowdragon ' has already given you the links above.
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