I came across this forum today and read a few posts and you seem so helpful so hoping someone can give their views to my concerns for my GP wanting to increase my dosage. A bit of background:
2008 I was admitted to hospital with heart failure and fluid on the lungs, turned out to be a severe undetected overactive thyroid
2009/12 after various trials with Carbimazole and Levothyroxine it was decided to zap the thyroid with radioactive iodine, I had 3 doses to kill the thyroid.
continued the carbimazole and levothyroxine trials till the right dose was achieved.
100 micrograms of levothyroxine, only once changing when a GP upped it to 125 only for another GP to reduce it back to 100 after 2 months.
2024 Got my blood test done this week and got a phone call from the GP who wants to increase it to 125 again on the basis that my TSH is 0.35 and my T4 is 12.4.
Am I right in thinking that as my TSH level is low taking more levothyroxine will just push it even lower, and it will increase my T4 levels.
As I don't have a thyroid would the TSH levels actually matter in my circumstance? I don't like to question the GP but I think she has not read my notes and may not be aware of the iodine procedure back in 2012.
Really appreciate any thoughts on this before I go back to the GP.
P.S I also have COPD and take Anora, Ventolin, Multi Vitamins and Probio7
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ShortRoundOne
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GP who wants to increase it to 125 again on the basis that my TSH is 0.35 and my T4 is 12.4.
What’s the range on Ft4 result. Different labs have different ranges
Ft4 looks low for most common range of 12-24
But range could be different
Recommended that all thyroid blood tests 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)
is this how you did your test
On Levo we aim for Ft4 (levothyroxine) at least 60-70% through range when adequately treated
It’s good your GP seems to be looking at Ft4 result, (more important) rather than just TSH
Multivitamins never recommended on here
Best to test vitamin D, folate, B12 and ferritin at least annually and supplement accordingly
Testing options and includes money off codes for private testing
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets.
Accord is also boxed as Almus via Boots,
So you won’t get 25mcg by Almus
Suggest you ask for Mercury Pharma or Wockhardt 25mcg
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva 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
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
First, many doctors regard TSH level as vitally important, at least, too low a TSH. Whereas many here regard it as unimportant. However, the impact of the difference between, say your 0.35 and zero is an unresolved issue with people arguing in both directions.
Second, that FT4 doesn't mean much without the reference interval, the range, because that varies considerably among labs. Can you find that out and add it?
If you need more levothyroxine, then increasing is by 25% - to 125 - is in my opinion, heavy-handed. The closer you are to a reasonable dose, the smaller any increment should be. It would make far more sense to increment to 112.5 than all the way to 125.
We so often read of this roller-coaster of increasing dose, then reducing, up and down, again and again. And each time skipping straight past what might be a much better dose.
You might need to split tablets, or alternate day dose (100 and 125 on alternate days) to achieve a dose of 112.5.
Thank you for the response. I've added the results of my test.
My question is mainly about the role of TSH if the thyroid is completely inactive due to radioactive iodine treatment (as in my case). If I understand correctly the TSH stimulates the thyroid but in my case I have a non functional thyroid.
Yes - TSH does nothing for or to the non-existent thyroid!
The issues are about whether TSH does anything else like affect rate of conversion from T4 to T3, or any impact on the hypothalamus, the pituitary, bones, etc. There are lots who have been fine for many years with effectively no TSH. But whether it has any impact other than on the thyroid is still undecided or unclear.
You FT4 is only 44.0% through the reference interval - which is a bit low.
Seems entirely reasonable to have a small increase and see how it goes. As I said earlier, 112.5 looks worth a go. Split a 25 or go for 100/125 alternate dosing. (Some are fine with alternate day dosing but others do not like the effect. I don't!)
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 - with T3 said to be around 4 times more powerful than T4.
T4 - Levothyroxine is a pro-hormone which needs to be converted in the body into T3 which is the active hormone that runs the body - much like petrol runs a car - and to get through a full day you likely need a full tank -
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH seen in isolation as can happen in primary care.
Since having had RAI thyroid ablation your HPT axis - the Hypothalamus- Pituitary- Thyroid - feedback loop on which the TSH relies on working well - now is broken - and your TSH a very unreliable measure of anything.
We generally feel best when the Free T4 is up in the top quadrant of its range with the Free T3 tracking just behind at around 60/70 % through its range.
Optimal conversion of T4 into T3 - generally requires optimal core strength vitamins and minerals - so it would be a good idea to get your ferritin, folate, B12 and vitamin D bloods run and we can advise where these need to be maintained for your best health and well being.
The thyroid is a major gland responsible for full body synchronisation from your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism
Some people can get by on T4 monotherapy.
Others find that T4 seems to stop working as well as it once did - and that by adding in a little T3 - likely at a similar dose to that which their thyroid once supported them with - before RAI ablation - they are able to restore T3 / T4 hormonal balance and feel better.
Some can't tolerate T4 and need to take T3 only - Liothyronine - as you can live without T4 but you can't live / function without T3.
Whilst others find their health and well being restored better taking Natural Desiccated Thyroid which is derived from pig thyroids, dried and ground down into tablets referred to as grains and contain all the same known hormones as that of the human thyroid gland.
Until around 2000 all these treatment options were available from your doctor if T4 - the cheapest option - didn't fully restore health and well being - currently your doctor can only prescribe T4 with a second line option being anti depressants - which leaves many people feeling it's all in their head and not listened to.
Was your original cause of your overactive diagnosis one of Graves Disease ?
How are your eyes - any dryness, grittiness, light sensitivity ?
Hi Pennyannnie, ty for taking the time to answer. The information I've received from everyone is beyond what I expected.
The original cause was thoroughly investigated as I was in hospital for over 3 weeks. Graves Disease was a topic but I never heard anything back (I was told if you don't hear it means nothing is wrong lol!)
Well - I think it would make sense for you to find out exactly what you are dealing with as your Block & Replace treatment plan is generally used is cases of Graves which is a chronic long term Auto Immune disease for which there is no cure.
If Graves we are looking for positive and over range TSI - Thyroid Stimulating and or TRab - Thyroid Blocking antibody - sometimes written as a TSH Receptor antibody reading and cut off number and generally this blood test run at the very outset of illness and ideally before any medications have been prescribed, except perhaps for a beta blocker if the heart is involved.
Graves can be life threatening as this immune system malfunction tends to only get diagnosed when the immune system turns and starts attacking the thyroid and or eyes - and for some people the results are totally devastating -
Anti Thyroid drugs such as Carbimazole/ Propylthiouracil are prescribed to block the thyroid making more and more thyroid hormones and if this doesn't resolve the over production of thyroid hormones the last option is to remove the target of the immune system attack - the thyroid.
I have Graves and was treated with RAI thyroid ablation way back in 2005 - details on my Profile -page if interested - just press the icon alongside my name and that takes you to all I've ever written on this patient to patient open forum -
and your Profile page is stored under the Profile icon on this page - and facing me on my laptop it is top right alongside My Hub - Chat - Post and Alerts :
TSH responds to both free T4 and free T3 hormone and so is a good marker for thyroid hormone status in most but not all people.I'm surprised your doctor wants to change your dose as fT4 suggests your dose is fine and TSH suggests you are on a little too much. Really they should have also measured fT3 but the labs usually refuse to do this for GPs.
How do you feel? This is more important than your middling blood test results.
I'm 63 kg and it took a fair while to stabilise me on my 100/125 Levothyroxine on alternate days after my RAI in 2013. It was a case of try 1 dose for 6 weeks, re-test, repeat etc. Good luck.
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