Hello, it's been a while since I last posted as I've really not been feeling myself. I was put on 25mg of levothyroxaine 6 months ago due to being sub clinical hypo after a bout of very painful De Quervains thyroiditis as I was
TSH 7.3 (03 - 4.30) and
FT4 9 ( 8.9 - 17.3)
TP0 38 <6
I was upped to 50mg 3 months later as I was -
TSH 5.1 ( 0.3 - 4.40) FT4 11 ( 8.9 - 17.3)
and then was tested 8 weeks later and was
TSH 2.44 ( range 0.3 - 4.40)
FT4 11.9 ( 8.9 -17.3)
I spoke to my GP at this point as previously I had a small window after the increased dose of feeling really well and I actually had a period ( not had one since March and becoming hypo) but when I spoke to the GP I was already starting to feel rubbish again and had a feeling I was going the other way again, but she said I was now normal and also only the consultant can change my dose.
I don't get reviewed until I speak to the consultant 3 months later which is a long time feeling rubbish and so I got my results yesterday and as I thought I was now
TSH 3.5 ( 0.3- 4.40) and
FT4 12.1. ( 8.9 -17.3)
When I spoke to him, the consultant told me
I was now completely normal and it was only when I asked him what my results were and mentioned that they were going back up and I had been extremely achy and tired, that he has upped the dose to 75mg every other day.
I know for a fact that I won't get reviewed again for another 3 months, so my question is what should actually be happening regarding my treatment? I know when I've had bloods done previously before De Quervain's, and my tsh was around 1.3.
Should I go private? It just seems like an awful long time to have a tsh that's still not right despite being on treatment.
Ive started taking high doses of vit D recently which has really helped with the aches and am trying to cut down on gluten as I realised it was making me inflamed.
I just need to get back to having more stamina as I felt so good for a few weeks back in the summer and want to feel myself again.
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Julietilly22
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Before considering seeing a private endo, I would push for full Thyroid blood tests and share results with us (with ranges in brackets), ie
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
It’s much easier getting all tests done prior to seeing a private specialist as blood tests arranged through private hospitals invariably cost more. From personal experience, it’s also worth testing and optimising key thyroid vitamins.
‘Cutting down’ on gluten isn’t really that helpful. Even small amounts of gluten can cause inflammation. You need to try eliminating it completely for a couple of months to see if this benefits you.
I'm under an endocrine consultant presently but just feel the whole process is being so dragged out and I'm not sure they are following the correct procedures regarding dose increase. I'm TPO positive but became hypo after a bout of very painful viral thyroiditis a year ago. I put the range for one of the tests result but will put it next to each one.
Also remember to get up to date blood results for ferritin, folate, B12 and vit D. I think Medichecks currently have 20% off the advanced thyroid test, so it’s worth having a look.
I had a small window after the increased dose of feeling really well..... but when I spoke to the GP I was already starting to feel rubbish again
This is not unusual...put simply the body has appreciated the extra hormone but soon realises it's not enough so signals it needs more by way of returning symptoms
Given your labs and symptoms you are not " completely normal", that is an ill informed diagnosis .
When medicated your TSH should sit close to 1....not 3.5!
However, without both FT4 and FT3 tests It is impossible to draw an accurate conclusion.
Suggest you raise your dose to 75mcg levo daily and test again after 6 weeks.
You need to test....
TSH, FT4, FT3, vit D, vit B12 folate and ferritin....no need to repeat antibodies you already know you have Hashi's.
A gluten free diet should help....with the emphasis on FREE!
I would be inclined to contact your endo's secretary, explain that you are really struggling and wish to increase your dose to 75mcg daily. This should be passed on to the consultant. If they question this ask that they test TSH, FT4, FT3 to get a full picture of your thyroid status before refusing the increase.
You may need to politely make your presence felt otherwise it will be assumed you are coping.
Thank you for your reply. The consultant ( or possibly registrar? ) told me exactly that yesterday! That I was normal! Even my GP told me I needed to get my tsh below 2. The biggest problem and obstacle here is that the secretary is a COMPLETE DRAGON! I get my bloods taken at the hospital 6 weeks after starting each dose and I usually have to ring my GP for the results but even when the results back nothing is done. So for example, when I started on the 25mg , I didn't get increased to 50mg until 3 months later despite knowing my results were still not normal after 6 weels as the horrible receptionist tells me that the consultant will only ring me if he's not happy with my results ( I went from 7.3 to 5.1 )
My GP can't go against the endo department so the whole thing has been really dragged out. So now I'm going to be on 75mg every other day.
You are right there! When I rang and told her I was feeling worse and was constipated etc and I needed the increase after starting on the 25mg she dismissed it saying it was probably something else and to try laxatives! I feel like reporting her to be honest as she shouldn't be making medical assessments. Because she is so ultra rude when I ring, I've now given up. So I will get tested in 6 weeks from now , and then I'll hear nothing until my next hospital appointment in 3 months. No unfortunately the GP said he has to leave it to the hospital.
Secretaries are not qualified to diagnose or advise.
Full test after 6/8 weeks on 75mcg daily....not every other day.
In your shoes I'd just take the 75mcg every day and if you run out just say ....goodness, the instructions were't very clear so I've run out of tablets....but I feel much better!
No point testing until you have been on 75mcg daily for minimum 6-8 weeks
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine were you taking on 50mcg
Which brand for 75mcg
Many people find different brands are not interchangeable
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
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
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).
I've been on 50mg for 3 months my latest pack is Accord. They only give it monthly so I can't remember the others but wockhart or something rings a bell. I've not started 75mg yet as only spoke to hospital yesterday.
They have been testing me after 6 /8 weeks but I never hear back from them until my next appointment which is 3 months later. I usually chase up my results but it makes no difference as I stay on the same dose regardless, till the next appointment. When I've rang to say that I need to be increased the secretary is really horrible. So the whole thing has been so long winded.
Complain to the Practice manager that the secretary is making medical decisions. They are not allowed to do this.
Start taking the 75mcg now, every day, and then ring and say you dropped them in the sink by mistake and need a new prescription. That will tide you over for a bit, and in the meantime get the full tests as above. Good luck!
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