In July last year I increased my Levo to 125mcg from 100mcg, was retested in September and results were
T4 14.3. (9-19.1)
TSH. 0.20. (0.35-4.9)
T3. 3.9. (2.4-6)
Although lab had marked TSH as below range gp marked the results as satisfactory.
I have been retested this week and results are
T4. 14.6 (9.1- 17.6)
TSH 0.09. (0.35 - 4.9)
T3. 4.3. (2.4 - 6)
This time GP has marked as need to speak to doctor, so I know what's coming. TSH too low for them. I am feeling much better on this dose but if I carry on I was wondering if the TSH would rise or drop lower ? My T3 is only slightly improved and I can't really tell with the T4 as the range seems to have changed . I started supplements of vit D3 and the igneous vit B as recommended on here and plan to have a medichecks next month to recheck. Even though the haematologist I see thought a result of 65 for vit D was fine (range was 50-200 ) .But in the interim when I get the call from GP about the low TSH I want to be prepared to argue my case for staying on the increased dose. Test was done early morning with nothing but water beforehand and I stopped the B complex a week before.
Thank you
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jodary
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Interestingly, patients with a serum TSH below the reference range, but not suppressed (0.04–0.4 mU/liter), had no increased risk of cardiovascular disease, dysrhythmias, or fractures. It is unfortunate that we did not have access to serum free T4 concentrations in these patients to ascertain whether they were above or within the laboratory reference range. However, our data indicate that it may be safe for patients to be on a dose of T4 that results in a low serum TSH concentration, as long as it is not suppressed at less than 0.03 mU/liter. Many patients report that they prefer such T4 doses (9, 10). Figure 2 indicates that the best outcomes appear to be associated with having a TSH within the lower end of the reference range.
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian."
Thank you, I will try ,in the past they get very annoyed if you try and tell them anything. My haematologist "fell out " with me on Friday because when she said the Vit D test she had done showed a result of 65(range 50-200), I told her it was now only 39 ,( same range ) so of course she asked where I got that result. It was medichecks and her tone completely changed. . Then I asked her about taking Vit K2 with having the blood problem and she got really stroppy and said take 800iu of D3. So I'm still none the wiser about the vit K2. So fed up of getting the same attitude with all doctors.
So new test shows improvement in FT4 level as well as slight improvement in FT3 level. I assume your last dose of Levo was 24 hours before the test?
The TSH is largely irrelevant once on thyroid meds because the pituitary is satisfied that you have thyroid hormone so doesn't need to send the signal (TSH) to the thyroid to make hormone, hence TSH stays low. It's a pity that doctors don't understand this. The only reference I have for this is:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional 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 confirmed, during a talk he gave to The Thyroid Trust, that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article by emailing ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Whether your GP will be willing to accept this is another question. Unfortunately I don't know of any NHS guidance which states anything similar.
No, I haven't had ultrasound. I feel very much like I can't carry on with the fight sometimes. Especially since getting the MPN, all the doctors seem so hostile and sometimes I feel like it's just not worth discussing anything with them. They just hate you having anything to say .
Your FT4 level is better following the increase to 125mcg....tick!
And, supplementing with vit D may have improved your T4 to T3 conversion...tick! The result of both actions being a higher FT3....tick! That is good news!
Low FT3 = poor health.
If you feel well then don't let them reduce your dose based on lower TSH...your higher FT3 level will most likely be the reason for the TSH drop.
I need high dose T3-only and my TSH has fallen off the bottom of the scale...that's how the body works.
TSH is a signal to the thyroid gland to raise or reduce the amount of hormone it releases depending on how much hormone it detects in the blood
In basic terms...
Higher hormone levels - TSH falls
Lower hormone level - TSH rises
Bottom line- TSH is not a good guide to dosing, it was originally used as an initial diagnostic test for hypothyroidism. Through time the waters have become muddied as it has become used as a guide for dosing, with the result that people are being wrongly medicated....and remaining unwell.
You are not overmedicated if your FT3 is within range
FT3 is the important result not TSH
This will provide you with the basis of your argument not to lower your dose!
You've done all the correct things just a pity medics are not so clued up!
Don't be pushed into reducing your dose with threats of "dangers" of low TSH, that's nonsense.... if you feel well on 125mcg levo maintain the status quo
I used to make a list of all the things I wanted to ask/say at appointments it saved me squawking like a demented parrot if nerves caused me to lose the thread of the conversation.
Thank you for that, it was an interesting read. Some years ago when a similar thing happened the gp just took the 25mcg Levo off the prescription so that I couldn't order them. If they do ring me ,and I'm not that sure they will, I will do my best to explain my point of view. In past experience they will not be the slightest bit interested but we will see what happens. I know if I mention Medichecks that will really go down like a lead balloon , I found that out last week when I told my haematologist my Vit D was low and I was supplementing.
A GP once pointed out to me, when I was starting on my T3-only journey, that medics had to recognise Patient Autonomy.
It's high time they got off their high horses, swallowed their pride, and understood that we have known our body for a lifetime....not the duration of a 10 min appointment....and that we do actually possess a functioning brain.
Dr D-Peatfield is quoted as saying, "I treat the ( thyroid) patient as if they are just as bright as I am and perfectly able to work things out given the knowledge".
A different human being!
Sorry, I'm ranting again, it comes with the intolerance of advancing years
Don't tell them straight what you want , they rear up at that. Instead throw them off their track e.g. "I was thinking etc etc ....what evidence can you provide that this is not worth trying."
When the spluttered explanation starts then hit them with the facts and evidence which you have ready to hand.
Thank you. I had an answerphone message from the surgery asking me to ring back so looks like it's happening. I have had a look back on my records from the NHS app which show all my results since 2005. All the times I just didn't hear anything after my blood tests, I have some interesting results. High T4 and high TSH, no T3 ever done but all marked no action. Even when my TSH was 7 or 8 and the range 0.5 to 4.4. It makes interesting reading .shame they weren't concerned about TSH over their range instead of being concerned when it's under their range.
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interpretating test results 
Test Results - no thyroid problem
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Blood results Advice appreciated
