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?

The thing about private testing is that no doctor is likely to take any notice, so you must have a plan for those results to avoid it being a waste of money. Probably better to put the money toward a private endo referral if you have someone on the list you'd like to see. Before seeing my endo I posted a question ('Has anyone else seen this endo, can you pm me' sort of thing) on the TUK forum, which helps to prepare you for what you're going to get.

Any chance you could see a different doctor in the surgery? That 'dose increase' (something like an extra 15mcg daily) is not likely to do much for you with such a high tsh, and it's so infuriating as your tsh is just glaringly too high and you're symptomatic. It's not poison, I don't understand why, if they want you 'in range' they think it's preferable to be high in range rather than low, or even right in the middle? Even if only to see how you feel, if there is any improvement. It just seems cruel to me.

Do you know your cholesterol levels?

I actually suggested taking it every other day, as I had palpitations at the higher dose previously. She'll increase it if necessary after testing again.

I'm assuming she'll run the same set of tests as last year, so I need to check that covers everything I need. I think she'll be ok if I phone up and ask for anything extra to be added (except T3, of course!).

The endo she has suggested has a good reputation for thyroid problems; unfortunately, the rest of his team don't, and I don't expect I'll get to see the head honcho.

You can ring the endo's secretary and ask to see 'the head honcho' as you put it. I did that after getting fobbed off on a flunky who said I probably had myasthenia gravis (so much more exotic than plain old undertreated uat lol). (And here I am optimally medicated and fine, no mg, no remaining symptoms, all's well that ends well.)

Your gp sounds as if she has given you a good plan for now. It can also take a while to feel better even when your results are at the right level (ie 1. or just under)

I misunderstood that sometimes over time you do need more than previously, even if a dose gave you palpitations last year it might be right dose this year, I just assumed five years ago I would be on the same dose forever so did not understand that the "in range result" at GP was not necessarily the same as a proper 1 or under result from an endo.

25 mg every other day does sound like a good starting point, and then if your TSH doesn't go down enough after 8 weeks, increase it to every day. But it is good to have a second opinion from an endo.

My NHS endo did test T3 and T4 and TSH but certainly didn't prescribe anything other than levothyroxine and vit D.

I took 50mcg a week extra to previous dose and my TSH dropped dramatically, to 0.5, she then recommended only 25mcg extra once a week on top of usual dose, even 25 mcg A WEEK extra can be too much, she wanted my TSH to go up to 1 again. So a even a very small amount over or under can be too much or too little thyroxine for your system.

Nettle, did you ever get to see the results of your T3 test? Do you know if you should have been prescribed T3?

Yes, I'll dig it out after lunch (not near the right drawer atm) There was no suggestion of being prescribed any T3, but I'll tell you the exact numbers if I can find the bit of paper.

I looked up my results and although my T4 varied, I can't see any sign of further T3 tests, I presume they correlated with the TSH/T4 reading so no need to discuss them with me.
My iron, my B12 and my folates were always good, it is only my Vitamin D and my TSH that have been up and down.

I really feel much better this last week, I think the new dose is really helping. Hands and feet still hurt though so Vitamin D still being scoffed!

I noted that the NHS endo wrote next to a Vitamin D reading from 2 years ago that 66 was "insufficient". So anyone who is told by GP that 66 is fine, take note, it is not, if you have a thyroid condition. It should be 100-120. That is what endo told me.

My GP had ticked 20 as fine !

are you sure sirvix under 25 even in ordinary GP reckoning is deficient.

sometimes the person looking at the results, not the GP will write no further action, even if everything else is normal, one result can get missed. This happened to my son, Doctor's surgery manager then went back to check all the results in the last two months in case other people's results hadn't been properly checked. It should say on the printout from surgery what the range is so that you can see what is considered normal or not.

Well I rang for my results. All had been labelled fine, but I asked the vit d because I wondered if it was borderline (brother has low vit d too ). It was 20, yet my GP hadn’t flagged it, so I didn’t realise how bad that was until I explored what it should be and mentioned it to my private gynae.

That is terrible Sir Vix, you should be taking Vit D supplements right now, whether you see an endo or not. As I said before I was told to take 20,000 a week as a loading dose (you can buy it over the counter in one capsule equals 20,000 HealthAid trademark D3 - NHS endo said that was a good brand btw) for 2 months then retest my Vitamin D (this was seven years ago when first diagnosed) I am on 10-14,000 IU a week atm again on endo's orders. The latter is a perfectly normal maintenance dose for Vitamin D in hypothyroid patients, unless there is some medical reason not to take it (which there are a few, like Sarcidosis)

Be very careful I had all the symptoms reappear after my second child. Assumed I needed to up medication as it was the same symptoms I had before going on it. However after blood test it appeared it needed to go down by 25mg. Please please don't self adjust.

Idon't know where you live but in the uk everyone is advised to take vitamin n D supplements in the winter at least ( and in the summer if you are not outside a lot).
The normal ranges have recently been adjusted locally to me so that' insufficient 'is now less than 50 rather than 75 which might explain the pps different advice regarding vit D.
20 is clearly low though.

levothyroxine and vitamin d are two different medications/supplements, and levothyroxine of course needs very careful monitoring. But low vitamin d can cause many of the symptoms that people who are hypothyroid associate with too little thyroxine, tiredness, aches and pains, lethargy, weakness. If you have low vitamin d and adequate thyroxine you might think you needed more thyroxine but it was possibly a problem with the vitamin d (or iron, or folates or B vitamins)

That's why you need a GP who has seen the current guidelines to look at your blood test results carefully and refer you to an Endo if there are unresolved issues, not self assess and self medicate...

I think my doctor just rolls a dice to decide whether my dose should go up or down. I don't really have the confidence expressed by the last couple of posters in the system.

@Namesallgone18 no, same here. It's a struggle just getting the correct tests done and they often adjust the dose when there's no need to do so. I consider myself lucky that they prescribe my meds so I try to keep my mouth shut and fly under the radar.

I've been on the slightly increased dose of levothyroxine for 8 weeks now, and have just had my bloods redone. Could someone please comment on my results?
Serum TSH 0.03 (range 0.35 - 5.0) - flagged as abnormal, but I think it's probably ok.
Serum free T4 20.4 pmol/L (range 9 - 24)
Vit D is at the lower end of the normal range.

There are plenty of other results (apart from T3) so let me know whic ones you think are relevant and I can post the results.
Thanks

When my tsh was slightly lower than that I felt bloody awful. So how do you actually feel? They don't like you to have a hyperactive level of tsh because it can cause problems with your heart. The endo I saw was emphatic that I could be at the lowest end of normal and that was fine, tip over into hyper range and they'll reduce your dose.

I still feel fat & slow. No palpitations at this dosage though.

I'm slightly about the t4 being 20. If your t4 is 20 and your t3 is higher in range then I'd say stay there and see how you feel in four months. As usual they've left out your t3, so there's no way of knowing. If you're not converting well (which may be the case since t4 is higher in range) your t3 could be nothing and that can make you feel awful.

If you feel fat and slow after two months (no improvements at all?) I'd think about a plan to see a doctor who will look further at how to help you feel better. Or get a full thyroid screen kit and diy, then post on TUK for help.

And if there are no contraindications you need to supplement vit d. You may need a loading dose depending on how low your test results are. Look here for advice: www.imperialendo.com/for-doctors/vitamin-d-guidelines

No palps is good news though. I get palps when my dose is too low so maybe thet's an improvement from the increased dose. Any doctor I've spoken to about this will swear up and down it's just when you're overmedicated but on the TUK forum it seems a common uat symptom.