This follows on from a previous ost of mine, but I thought I'd create a new one as it might get lost. Previously I'd been for private tests and got the following results:
TSH level: Your result is 2.39 mu/L (normal range 0.27 - 4.2 mU/L)
FT3 level: Your result is 4.8 pmol/L (normal range 3.1 - 6.8 pmol/L)
FT4 level: Your result is 19.4 pmol/L (normal range 12 - 22 pmol/L)
The gist of what people were saying was that I probably need a bit more levo as my TSH was a bit too high.
So, I have an update. Hmmph.
I just had a phone appointment with my doctor following me expressing concerns re: thyroid lvels during my diabetic nurse appointment last week.
He was looking at the last tests done by him, which were in October last year. I was preparing to unveil my lastest private test results (TSH 2.39, etc), to convince him to increase my levo.
Instead, he got in ahead of me by quoting the previous results. I hadn't realised (as I hadn't actually been told), but at that point my TSH was 4.2 (range 0.4-5.33) and FT4 was 13.2 (range 7.9 - 14.4). He didn't have a FT3 value.
"Easy job", I thought, as that makes the case even more obvious. But then he told me that everything was bang-on in-target, so no need to change my medications. And despite me making the case otherwise that TSH should be closer to 1, he simply would not budge.
So, as he holds the key to my medicine, I am a bit lost now. And this is depsite going thorough a pretty rough time of it lately with various symptoms like tingling feet and tinnitus that COULD be thyroid related.
Any ideas what I could do?
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mids_thyman
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So frustrating when you are symptomatic and have room for improvement. You are a long ways from being over medicated, so I don't see why even a 12.5mcg increase would be an issue and may make you feel better.
Unless you can convince him that you would like a trial on an increase, you may need to find a new doctor. He is obviously not listening to you and is more concerned with you being in range instead of at the level that makes you feel better.
Would he consider 5mcg of T3 since your T4 isn't horrible?
Hi Trina. I'm left with the impression that the conversation is over. He just woudn't give an inch, but did give me a lecture about how symptoms mean nothing and you just go by blood tests, and I'm in range. I'm seeing him for a few other things as well which he's being really good about, so am trying to keep him on-side. I have an appointment with a diabetic doctor, who will also be an endocronologist in May, but that's 2 months away. I'm wondering about if it's just easier to go private to be honest.
I am in the United States, so things may be different. We do find that most doctors who do not take insurance will work closer with patients, however, they also do a lot of unnecessary things (e.g. supplements and testing). So, finding the balance is difficult.
Hopefully the endo you will be seeing will be more helpful. Symptoms mean everything. The test can serve as information and give a direction to go, but that doesn't mean you are where you need to be as an individual.
I don't think it is anything to do with lack of GP training but rather the budget. I know levothyroxine is is cheap but they try to save pennies all the time. I have been refused medications I have needed a number of times including for other conditions.
Yesterday, I had a follow up appt with an endocrinologist re underactive thyroid. I had changed my GP surgery because (a) my regular GP who I liked had left and (b) I had moved house. He was wondering if my new GP surgery would be willing to prescribe the Levothyroxine and thought I might as well pay for it as it "costs almost nothing". Anyway, he is going to speak to them about it and see.
I had run out of my HRT over which I had to fight last year. He gave me a private prescription because he anticipated there would be a fight causing a delay. This is Tibolone 2.5 mg and from Boots it cost £6/month yet on line it costs £20+/month on line.
So, yes I would see a private endocrinologist but after the first couple of appts, just restrict them to one per year. You will either be able to get the Levothyroxine from your GP or on a private prescription.
I know the popular opinion on here is that GPs are not sufficiently trained but in my experience it is a question of money. I was untreated for 20 years despite a raised TSH until I developed a goitre - and it was all on account of money. GPs are always directed by their local lab anyway and don't really have a say in the matter. My local lab kept saying just to repeat the blood tests in six months and no treatment required.
I was covered by BUPA for my appts/blood tests with the endocrinologist but the one yesterday was the last one they would cover - they said they had covered the others because I had a goitre which they considered an acute episode. If you go private, try to get the GP surgery to do vitamin blood tests as it will reduce the cost.
I'm sorry your doctor has responded in that way. GPs get little training in how to make us well and believe that a result anywhere in the reference range is sufficient. We know they are wrong.
I suggest you have a read through a few of the pinned posts, especially the one on NICE guidelines that doctors work to.
Unfortunately as thyroid patients we need to learn a bit about our condition and inform our doctors of how to make us better. You need to become your own health advocate. You need to gather evidence that you require a dose increase and that it is safe to do so. Approach a different GP at the same practice if you think they may be more open minded and helpful. If one turns you down then try another. Don't stop asking for that increase until you get it.
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. "
I forgot to mention, thinking about it the bloods taken in October the doctor was talking about (with TSH of 4.2), were just taken as part of a normal blood test. I was unaware that there needed to be 24 hours since my last levo dose, and no-one mentioned it. Would that account for a higher TSH than my March results?
Stopping Levo 24hrs before a test is to avoid catching the peak in your bloodstream after you take a dose. If we leave 24hours then the blood result will show the stable blood level of T4. This does not affect TSH at all.
Morning, what dosage are you on now?, do you feel comfortable changing your dose yourself? If so just add extra 25mcmg of levo every other day for a few weeks, see how you feel with this, if you feel ok and no symptoms like heart palpitations then do it every day.
You can up and lower your dose as and when your symptoms tell you to, I'm tweaking mine and added levo 5months ago to my daily dose of NDT, however, my levels have dropped again, my GP has agreed to let me trial hrt patches instead of tabs to see if it makes a difference.
can you just up your medication very slightly by cutting your tablets into quarters or halves. Do they keep a tight control of what medications you have and dates you can request a repeat prescription. My Drs and pharmacist does not seem to have any tight controls on my ordering. If it’s not tight then just up your thyroxine by 12.5mcg every other day until your next blood tests. If you feel you are going over medicated during that period then just go back to the original dose or drop off the 12.5mcg for a week then return to it. I feel it’s all about how you feel and being closely in tune with how you feel and what meds you are taking. You could keep a daily diary for a month or more to monitor how you are progressing. Weigh yourself weekly. . Do you feel more energised and symptom free with the very slight increase. You don’t want to overdo it as over medicated can feel the same as under medicated. Also ensure your vitamins are all optimal
Thanks. Yes, this was what I was going to try, upping my does. I just need some advice by how much? Some say 12.5mg. Some say 25mg. I'm currently on 50mg/day.
I probably have enough Levo here to do that until July, so not sure what I'll do then. The NHS in the UK is brilliant. But sometimes it means you can't be as demanding as I'd like with the doctors (this may be a part of being British as well!).
I was thinking try that, then in July find a private doctor that specialises in Thyroid. It seems I'll be having a constant battle with my current doctors. After this week I realise I maybe need someone who understands all this better.
I had exactly the same issues with my GP Practice for several years. I’ve been in Thyroxine for almost 30 years. They just kept saying 4.5 or 4.2 was within range. I couldn’t even get a face to face appointment to discuss it. Just reception saying the Dr says your results are within range! I had private bloods done but then was admitted to hospital with palpitations & showed them my results from previous 2 years. They said I needed referral to an Endocrinologist & asked my GP to do this in my discharge letter. He refused TWICE! Eventually he agreed & I had my appointment & he said I was under medicated & had been for years. Hallelujah! I had 2 increases & then discharged! My levels are still not good with T3 at around 3.4. I’m now stuck so going to look at going privately. Thyroid UK sent me a list of Endocrinologists so will start there. They along with this group have been amazing. It’s dreadful that we seem unable to access the appropriate care. I don’t have any suggestion but keep on fighting. Good luck x
if in your position (with a GP who wouldn't increase despite him thinking TSH is 4!) .... this is what i would do :
first get your hands on enough spare levo to increase your dose by 12.5mcg to 62.5mcg /day ( you can take 25mcg every other day if you don't want to cut the tablets in half ) for at least 6 weeks . (if necessary ~ 'lose a packet at the airport' and ask surgery to sort you out some 'replacements' )
take 62.5mcg for 6 weeks.
then make appt with GP ... "i was struggling to function on 50mcg and so i tried increasing my dose by 12.5mcg to see if it helped and i've notice i feel a bit improved on the higher dose, would you please do a repeat thyroid blood test to see if my blood levels are still ok on 62.5mcg ?" They pretty much have to do a blood test when presented with that .
Assuming TSH comes back comfortably within range and fT4 is also within range they will have no excuse to ask you to lower the dose
Repeat this process as required ..... if TSH goes below range before you feel better ,you'll have to come up with another strategy , but while TSH remains in range "do it first and ask permission later" works quite well .
It's probably harder than it used to be to get enough 'spare' levo nowadays as prescriptions are sometimes only for 1 or 2 months ... (they used to be 3 mths) and some surgeries now won't let you order repeats more than 10 days early ... but "where there's a will, there's a way."
be pragmatic , play the long game ... 12.5mcg is less likely to put TSH below range than 25mcg is .. if your increase your own dose by a full 25mcg and it puts TSH below range , then GP will say 'told you so' and insist you put it back down.
.... but if you increase to 12.5mcg (which might well improve how you feel anyway) and TSH stays with range , and you report feeling a bit better, then GP may realise he was wrong to refuse the increase , and fingers crossed might be a bit more reasonable with your requests in future.
That's cool. Thanks Tattybogle. I was asking because I have recently developed symptoms of low thyroid (tingling & pain in feet & hands, tinnitus), and so am keen to see if it improves things as quickly as possible.
I had a very similar conversation with my GP yesterday, where she kept saying “I’m very happy with your blood test results”, even though I was telling her my symptoms. It’s always over a phone call, which I find very difficult, but I stood my ground and eventually she agreed to trial 75mg per day with review of bloods in 8 weeks (I’m currently 50/75 every other day). I just kept saying I’d read up on it and optimum TSH seems to be around 1 (mine is 2.8). It’s very frustrating isn’t it, when they don’t seem to be listening. You could offer to send some links/references to support your case? They have some great resources on here. That was my next step if she hadn’t agreed…
Poeple who have previously responded won't get a notification as you effectively replied to yourself. As this is 8 weeks on it might be better to start a new post.
Free T4 (fT4) 19.3 pmol/L (12 - 22) 73.0%
Free T3 (fT3) 4.9 pmol/L (3.1 - 6.8) 48.6%
Your FT3 is getting close to optimal. Did you remember not to take your Levo before the blood draw and instead take it after that day?
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