I had my thyroid removed at the beginning of May due to it's size and the fact it was growing behind my oesophagus and down into my chest area. This has resulted in a paralysed vocal cord with all the issues that creates, but I wondered if any of you good people could explain my results to me. There seems to be more experience and understanding on here than anywhere else, but I can see that it is a very complicated area of health to try and unpick.
Immediately after the op I was put onto 125 mg and then re-tested at the end of June when I had another surgical procedure (vocal cord filler - which wasn't successful).
Those results were
FREE T3 5.6 (3.5-6.5)
FREE T4 16.8 (11.5-22.7)
TSH 0.14 (0.55-4.78
I seemed to be putting on weight fairly rapidly, which bothered me, but felt reasonably well otherwise. In September a re-test showed
FREE T4 15.5
TSH 0.42
The dose was altered to 100 mg on 3 days, 125 mg on 4 days.
Hair has started thinning quite badly now (I lost it all through chemotherapy for breast cancer 18 months ago but it had grown back reasonably well). In consultation with my doctor dose was changed to 125 mg on 3 days and 100 on 4 days and I will be re-tested in due course.
I'd love it if someone could explain all this to me - probably need an idiot's guide!
I feel ok overall, my tiredness is more connected with the exhaustion I get from straining to speak because of the vocal cord issue.
Thank you.
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Peppermint20
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Thank you for replying so quickly. I last had a Medichecks blood test done 13 months ago so can see another one will be useful. You live in hope that the NHS will test what's needed but of course that seldom happens sadly.
At that point Ferritin was 93.1 (30-650), Folate was 19 (8.83-60.8, B12 was 70.2 (37.5-188).
Vitamin D was 84.1 (50-250) but is now 140 (>49).
I take Vit D, Vit B, Magnesium and Omega 3.
Levothyroxine is generally Mercury Pharma and Wockhardt, although I had a different one at one point which I can't remember the name of.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Thanks so much for all this very useful information. It does feel like a bit of a minefield to me, I'm hoping I will be able to grasp a basic understanding of it all from this very supportive group.
Just for reference a fully functioning working thyroid would be supporting you 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 :
There are 3 main thyroid hormone treatment options and for whatever reason for your hypothyroidism - whether with or without a thyroid gland in situ - everybody starts off on T4 - Levothyroxine - the easiest to manage, and the least expensive treatment option.
Some people can get by on T4 monotherapy - which is in fact a pro-hormone and needs to be converted in the body into T3 - the active hormone that actually runs the body - much like the fuel that runs a car - and you need a full tank to get you through the day - back and forth with what ever needs to be done and enough left to repair, replenish and restore your body overnight ready for the next day and whatever life throws your way.
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 - thyroid hormone - Liothyronine - likely at a similar dose level to that their thyroid once supported them with - they feel better and their T3/T4 hormonal balance is restored and their metabolism kick started.
Others can't tolerate T4 at all and need to take T3 monotherapy - as you can live without T4 - but you can't live without T3 - as T3 is the active hormone which runs the body - and read we need to convert / find - around 50 mcg T3 daily - just to function.
Whilst others find their health restored taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into a powder which is then made up into tablets referred to as grains.
Currently your doctor can only prescribe T4 - and you need to be referred to a NHS endocrinologist - to assess your needs - if T4 alone does not resolve your thyroid health issue and it has become something of a postcode lottery to get any other treatment option on the NHS.
In order to know how well your treatment option is working for you - we do need to see a full thyroid panel - at least a TSH + T3 + T4 blood test and range from the same blood sample.
and here again in NHS laboratories - due to financial constraints - run a ' cascade system for thyroid bloods ' meaning that if the TSH is in the range somewhere - you may get a T4 run - and if the T4 is in range somewhere - anywhere - no further biomarkers are run -
which saves around £1 per biomarker - but a total waste of money - as without a T3 and all 3 biomarkers run together - the information is incomplete - and you've actually wasted £1 / £2 running a worthless thyroid blood test.
The thyroid is a major gland responsible for fully body synchronisation from your physicality and stamina through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism.
It is essential - without a thyroid - that you are dosed and monitored on the Free T3 and Free T4 readings and not a TSH - your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop - on which the TSH relies on as working well - is now down regulated - as you have no thyroid there- is situ - to complete this feedback loop.
We generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range and at around a 1 / 4 ratio T3/T4 and hypothyroidism is within the ranges and why we need to build up our thyroid hormone levels to at least around 2/3rds through any range - and ignore the TSH reading.
No thyroid hormone replacement works well if our core strength vitamins and minerals are not maintained at optimal levels -
so you need to also ask for your ferritin, folate, B12 and vitamin D to be run and we can advise where ' optimal ' tends to be in the ranges - as again - just being in a NHS range anywhere, somewhere, is not conducive to good health and well being - especially when trying to recover and live well again after a medical intervention.
I found it very stressful just trying to get a thyroid blood test run at my surgery so I chose to go to a Private blood company and so had base readings of all I needed to work up from -
including the vitamins and minerals + inflammation and antibodies, and I also arranged to have a nurse home visit to draw the blood - which for me - the least stressful way - and if in England - between them - I believe Medichecks and Blue Horizon offer this service at point of sale.
There is a lot to take in and understand - just go one step at a time - but know that there are Private blood companies as listed on the Thyroid Uk website thyroiduk.org - if you find your doctor unable to run the 10/11 biomarkers needed - and having this blood test where we all need to start in order to get ourselves back on track through amazing support and understanding found on this patient to patient forum.
Thank you so much for replying. I will wait for a few weeks until my latest medication tweak has taken effect and then arrange to get a Medichecks test again. Hopefully posting those results on here eventually and having them evaluated by those who understand it all will confirm whether the dose I'm on is right for me at present.
Ok then - just remember you need an early morning appointment ideally by around 9.00am and in the first few days of the week as then your results should be back within a few days - and not stuck in a postbox or laboratory congealing over a weekend.
It is a fasting venous blood draw so you can just take in water o/night and until after the blood draw and you need around a 24 hour window from your last dose of T4 - so if you take your T4 in the morning - simply wait until after the blood draw.
T4 is a storage hormone - so it will not matter and if you take your T4 at night simply adjust the previous days routine and switch the PM dose to be a early AM dose so you have around a 24 hour window from last dose.
Always take any thyroid hormone replacement on an empty stomach and wait around a good hour before eating or drinking anything other than water.
If taking any supplements you are testing, or any containing biotin - these need to be stopped around a week before the venous blood draw so we measure what your body is holding rather than that recently ingested.
I think that is all - for now - keep reading around on the forum - you are not alone with all this - and why we are here as we are a patient to patient forum - and all been is a similar place and now come back, to give back, as a thank you to those who helped us :
If you get lost reading around just press the Profile Icon which sits alongside the My Hub-Chat - Post - Alert - Menu options - which on my laptop is top right on the screen - this will take you back to al you have ever written and your replies.
You can also read any forum members thyroid journey by pressing their Profile Icon which sits alongside any comment they have made anywhere on the forum.
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