Medicated for hypothyroidism, but still showing many symptoms

[ItWillAllBeOkayInTheEnd]

I have been taking levothryoxine for over 10 years, currently on 150 mg (mcg?) but still have about half the symptoms from the list on the thyroid uk website (tired, overweight, dry eyes etc).

Looking back at my last test results, it appears that the only thyroid test which was done was Serum TSH level which was 3.9 with a healthy range of 0.35 - 5.0. I had asked for a full set of bloods because I was particularly concerned about my weight. My GP specialises in endocrinology. I have an appointment booked for a few weeks time. Does anyone have any suggestions for what I should be asking for?

This is so interesting to read - I've got a TSH level of 3.7 and they won't put my levo up from 75mcg. I am tempted to add an extra 25mcg in every other day to see if it makes a difference.

How do you tell the doctor that you would like a referral if they think its all fine? It really is the most frustrating of diseases.

Ooh, my thyroid keeled over about 2 years ago and failing slowly and me suffering! I didn't know about the vit d supplement. I give my DS and DH one every day (1 coeliac and 1diabetic) will add some to my tablet pot. Should I take,it same time as my thyroid med ?

notapizzaeater no you shouldn't take a vit d supplement if it has calcium in at the same time as your levothyroxine. It should say that on the packet instructions.

You're better off getting a blood test to see what your levels are. If you're severely deficient then otc stuff will never work. You'll need prescription ones.

Op I second what SluttyButty says, you're undertreated. Also, I wonder if/when you're optimally medicated you'll begin to show an issue with conversion. At this stage t4 is too low and tsh too high to know. T4 is not as low as it might be and you're getting palps so it may not be being converted to useable t3.

@moonlight1705 I can't recommend TUK highly enough. They helped me get my life back. Go there and have a look, there really is so much to say about referrals and whether or not you need one, too much to say here. Unless there are extenuating circs (heart problem etc) you are deffo undermedicated with those results and your gp should be and could be giving you enough meds to get your tsh down (under 1 if that suits) and relieve your symptoms. May I ask what are their reasons for refusing you more levo?

@notapizzaeater don't take it with thyroid meds (they need to be taken on an empty stomach ideally an hour before food/non-water drink). Take it four hours later with something fatty (buttered toast will do, or your fattiest meal of the day). Ideally you'll know what your vit d levels are before supplementing as a deficiency requires a loading dose and 800IU a day is just money down the drain, it will do nothing if you're deficient.

Sorry, x post re vit d.

Btw otc vit d will be fine for deficiency, you just need more of it: www.imperialendo.com/for-doctors/vitamin-d-guidelines

Helpful about vitamin d. Mine is 20, my GP didn’t flag that as a problem. My TSH has been creeping up for months and is now 3.5 and I feel much more tired. I’m on 75 mcg levo, I really would like to see an endo but my GP has said it isn’t necessary, anyone have ideas for finding a good private person ? I’ve had a decade of feeling rough, I am so fed up of it.

Thanks mrsdewinter, I'll go check this out. They said I was in normal range so they wouldn't be doing anything. I mentioned about getting down to below 1 and they asked me which 'fake' medical site did I get that from as its not the NHS guidelines?

Plus I am TTC at the moment so could do with getting this right. Might kick up a fuss.

Itwillbeokay - I have similar results to you (a little higher in the TSH and about 15 in the TS4) but in a similar vein I also have symptoms.

moonlight your Gp doesn't sound very understanding! My Gp does understand that when I say I feel a lot better with my tsh very low I know what I'm talking about. I've been overmedicated before so I know the warning signs if I go too low and they know I'll discuss it with them.

@moonlight1705, sorry, are you actually being treated for uat or trying to get treatment? If you're within the normal range (even quite high tsh in range) it may take a lot of finessing to get anyone to give you a trial (although I believe when ttc it is a different matter, you can deffo find out more on TUK). But if you're already diagnosed and on meds that is too high.

A book frequently recommended there is the Anthony Toft thyroid book. He's an establishment figure who advocates keeping tsh below 1 if symptoms are not otherwise relieved, so taking the book (or an article he published in Pulse) to your appt may sway your gp away from irrelevant suspicions about fake medical advice websites.

@SirVixofVixHall please go to the TUK site before you waste money on a private endo who is likely to have the same opinions as an nhs endo. I'd go to the gp with the Toft article and if you get no joy find a different gp. Anecdotally gps are often more flexible than endos. What are the reasons for not trying a higher dose of levo?

I would never go the endo route with uat unless treatment is absolutely contingent on it, and you must know who you're going to. If you don't have a reason to believe they will listen to you then it is almost certainly a waste of time.

I got T3 and reverse T3 tested and discovered I needed more T3 - there's a community in the US who have all the info on their website. I was on Thyroxin 75 mcg per day and now take 50mcg and T3 troche first thing - it made all the difference. I also take cod liver oil most days in the evening

How do you tell/convince a GP that a tsh over one is too high if the range they use goes to 5?
I found it easier when I was ttc as they know it needs to be increased then.

@Iggiattheend the Toft article should help: healthunlocked.com/thyroiduk/posts/137456952/toft-article

Great thank you

@Iggiattheend not sure if the relevant info is in the document in that post (I couldn't find it when skimming the article) but you can write to the admin at TUK or post there asking someone to point you in the right direction.

Sir Vix my NHS endocrinologist at IMPERIAL hospital said that if someone has been medicated previously for underactive thyroid, their TSH needs to be 1.0. My GP did not understand this and my TSH was veering between 3 and 5 over 5 years. She also said that I need to take 20,000 iu (that's two 25mcg pills) EVERY DAY for the rest of my life, winter and summer. Initially I had a VIt D of 35 and I was given 40,000 weekly for 4 weeks, then 20,000 weekly, until my levels went up to 100.

This is all very important, please ask to be referred to an endocrinologist. Imperial Hospital do private appts for 150, and you can use the GPs blood tests, I really really wish I hadn't wasted 6 years feeling tired and slow for the sake of 150 £

Once she had diagnosed me properly as being undermedicated she was very happy to put me back into the NHS system again, but tbh by then I just wanted to properly monitored (although she was an NHS endo half the time, I couldn't guarantee seeing her in the NHS endocrine clinic)

I then needed to be further tweaked, an additional 25 mcg of levothyroxine has been added to my existing 125 x 7, just once a week. Just 25 mcg a week extra once a week, reduced my TSH from 5 to 1.

Thank you @Nettleskeins . I spent a decade trotting back and forth to the GP before being officially diagnosed, I knew my thyroid was underactive as my Mum had it too, but I kept being told it was fine. Then I finally got diagnosed five years ago when my TSH hit the twenties, by which time I’d spent a year fat, flat, blank, freezing and exhausted. I have been better at some times than others , I do feel best when my TSH is around 1, but even then I don’t feel completely well. If I have a busier than normal day I am exhausted the next. Now I feel worse again, I had a few days away just me and smaller daughter over the holidays, and I really struggled to cope, it was like wading through mud all day long. Bloods showed TSH at 3.5, up from 2.9 at Christmas, but GP has said that is fine. I don’t feel fine, and I am fed up now, I hate going to the GP.

GP tomorrow. I have low expectations 🙍

@ItWillAllBeOkayInTheEnd just so your time isn't wasted, do you have a clear idea of what you want from gp? My gp responded well when I brought the Toft Pulse article with me and gave me a levo increase (in fact he said he knew the tsh should be kept below 1 even though no one had ever bothered to give me enough meds to achieve that before I brought the article in).

If you want a referral I would urge you to research endos and request a referral to the one you want. TUK has a list of thyroid-friendly endos.

Full bloods might be difficult to get out of your gp. You can buy the test privately but then you need treatment options as gp is unlikely to take notice.

Good luck in any case, I hope you get some action on your meds and feel better.

Thanks Mrsdewinter. I can find a list of private endos - is there a list of NHS ones too?
Best to be prepared, although I'm not optimistic!

Yes, mine was nhs. You may have to email the office to get the list, I don't have the details but should be simple to find on the site. Endos generally have quite conservative views on treatment and I wouldn't take a chance on a random referral.

In my experience it's good to know what you want and find out how to go about it; if you leave it to your gp to make suggestions you may not get anywhere. Not to denigrate gps in general, just that those of us who aren't getting the best thyroid care, whose gps might be uninterested or uninformed, may need to direct the conversation more assertively to get better treatment. (Again, this is because of my own experience and what I've read as a longtime user of that forum, and I know there are others whose gps are proactive, helpful and knowlegeable when it comes to thyroid matters.)

thanks, I've emailed

I'm not sure I got the same list as you; these ones are all private, although some do run NHS clinics as well. None are particularly local.

Anyway, my GP appointment today went much as expected. I took the Toft guidelines. She hadn't seen it before, and didn't particularly agree with it but was happy to increase my dose by 25mcg every 2 days, retest in 8 weeks. She doesn't think the lab they use even do T3 testing. She wants to test for other things as well (Vit D, iron etc) so I just need to make sure everything is covered on that list.

She says if I still don't feel right after 8 weeks, she'll refer me.

Might just do the Medichecks T3 testing anyway, I think it will be quicker in the long run.