Amazed that doc never mentioned this... - Thyroid UK

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Amazed that doc never mentioned this...

Pippycat89 profile image

I went to the doc in June 2018 as I had numerous symptoms which (after some research) I suspected were due to an underactive thyroid. My blood test results came back as TSH 'just' out of range and low FT4 (results have been put in one of my earlier posts). Doc wasn't concerned as said the TSH was ONLY JUST out of range and FT4 was within range, even though it was low. The plan was to re test blood in three months along with test for antibodies.

I described my symptoms to the doc and they said it didn't sound like hypothyroidism. Yet my own research suggested my symptoms were very indicative, just not the usual ones that the docs expect (or know about). Furthermore, my blood tests DID suggest that my thyroid wasn't functioning properly.

I wasn't happy with the docs response, I was struggling with life and didn't want to wait another three months for another blood test. I knew what was wrong and felt at least a trial dose of levothyroxine was worth a go.

What followed was a fairly heated discussion, me pushing for a trial and the doc being very reluctant - partly because they didn't agree with my diagnosis (they were suggesting menopause, fibromyaligia...all the ususal suspects). In the end, they finally agreed to give me a trial dose of 25mcg of levothyroxine stating that all it might do is make me feel worse.

Five months down the line and several blood tests later, I am still on the same dose. Doc is still reluctant to increase as blood test results are going in the right direction (albeit very slowly) and they are very concerned about over medicating. During the last five months my TSH came down and has now gone back up a bit (but it is not out of range). My FT4 is gradually creeping up.

In terms of how I am feeling now, I am better in some ways, worse in others. One of my main complaints has always been joint pain, so on my last blood test they tested for inflammatory markers (again) - the result came back negative (again). I knew I didn't have an inflammation problem. My joints were 'sticking' and I didn't have full range of motion and various nodules have appeared on my tendons. They don't seem interested in any of this.

I am currently quite depressed, irritable and have a very short fuse with my partner. I have lost interest in life and have no motivation to do anything. I am tired and find it hard to keep my eyes open much beyond 6.00pm. Some of my joints are less painful, but the balls of my feet are very sore when I walk, I have developed a trigger thumb and it is painful to sit on the settee with my knees curled up. I think all of this (and my previous joint issues) indicate some sort of ligament/tendon problem...which I think is related to my thyroid dysfunction.

I visited my doc this week and discussed all of the above. I wondered if my mood may be a result of low B12 and doc has now agreed to test for this saying it is a possibility. They offered me anti depressants but I declined. There has been no increase in my dose and my next review will now be in six months time (as opposed to every six/eight weeks).

The surprising thing was (and the reason for this post), is that when I was talking to the doc about it being difficult to know what my optimum level of FT4 should be they said, "All we can do is compare your current level with previous levels." I asked them what they meant because as far as I knew my FT4 had never been measured. Turns out it had been measured in 2016 and the results were on my record and had been there the first time I went to the docs about all of this!

The level of FT4 on my first blood test was 10.1 pmol/l (range 7 -17), my level in 2016 was 16. I find it amazing that they have only just told me this, plus the fact that I have been seeing the same doc about this ever since this started. Also, this information was on the computer when I was sat there saying how awful I felt with the doc almost refusing to believe I had a thyroid problem. My TSH was out of range, my FT4 was low (and had dropped significantly from two years ago) and I was feeling pants.

My current TSH is 2.99 mu/l (4 - 4.5 mu/l). It started off at 5.1 with subsequent results being 3.44, 1.9 and now 2.99. I was started on 25mcg of levothyroxine partly because the doc was reluctant and (presumably) because I am 57 years old.

I have read all of the advice on here and taken on board comments people have been kind enough to make in response to my previous posts. I am therefore not really posting for advice, I just wanted to share my experience as it may help others who find themselves in a similar situation.

Although I was amazed and annoyed that the doc took five months to tell me what my previous level of FT4 was, I feel a sense of relief knowing that I do actually seem to have something wrong with my thyroid after all. I now know that I have not been imagining it all and that my symptoms were/are in fact real. The reluctance of the doc to agree with me during the initial discussion, made me feel like I must be wrong. And yet the proof was there on the computer!!

I don't know why my FT4 level is low, I don't appear to have Hashimoto's as I have no antibodies. Incidentally, that is one of the reasons the doc was reluctant to say I had a problem with my thyroid, they said I had no antibodies. They have not given me any possible reasons for my thyroid dysfunction; I have researched it and I can't seem to come up with a reason for it either. Perhaps it is just an age thing and my thyroid gland is becoming less efficient at doing its job. Whatever, the doc said this week that it will probably be best if I continue with the levothyroxine - presumably for life?

Thank you for reading and I hope this has helped/enlightened a few of you on here.

7 Replies
SlowDragon profile image

GP's often don't read, or don't understand the significance of any thyroid test results

Are you now on higher dose of Levothyroxine than 25mcg of previous post 4 months ago?

Standard starter dose is 50mcgs

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

Dose is increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Your vitamins were poor too and needed improvement

Still on the same dose as doc says results are going in the right direction. Next review May 2019. I have been taking various vitamin supplements and I think some of my symptoms have improved as a result. I am thinking that eventually the 25mcg will work - my partner doesn't agree and keeps telling me to increase the dose. I am reluctant as I don't want to go the other way.

It's a very difficult thing to diagnose and treat - hence the reason why there are so many people on this forum. Lots of people tearing their hair out (if it hasn't already fallen out because of thyroid problems!) because they know what is wrong but the docs won't listen!

SlowDragon profile image
SlowDragonAdministrator in reply to Pippycat89

Well 25mcg is only half the recommended starter dose

So it's very unlikely it's doing anything at all, other that turning your own thyroid hormone production down

Strongly suggest you get full Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you get results and ranges and members can advise on next steps

My Endo described 25mcg as a homeopathic dose. I just upped myself to 50, then told the doc, stating evidence 25 often just fools system to produce less - doc said fine let’s see how you go. Am now On 75 - again I just upped it myself persuading docs I needed to experiment on myself. I guess I’m lucky my docs are going Along with me but it’s annoying to have to do all the thinking. Good luck.

Pippycat89 profile image
Pippycat89 in reply to JAmanda

JAmanda - my partner keeps telling me to increase the dose myself, to just try it and see if I feel any better. Slightly reluctant in case it pushes me the other way, he says I would soon know and be able to stop.

If I don't improve much over the next month or so, I might give it a go. Good on you for taking charge.

Stourie profile image
Stourie in reply to Pippycat89

If you're scared to take an extra 25 mcg every day just try it every second day and see how you are. You will NOT be overmedicated on 25 or even 50 of levo. Your doctor does not know anything about your thyroid and how to get you healthy. Jo xx

Pippycat89 profile image
Pippycat89 in reply to Stourie

Thanks Stourie, not thought of doing alternate days. I might give that a go, nothing to lose x

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