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Thyroid experts, I need your wisdom re my test results.

(44 Posts)
SirVixofVixHall Mon 01-Jun-15 15:36:06

Just had bloods done, I'm on thyroxine (Hashimotos) but feel really rubbish all the time, here are my results, which the GP has labelled "satisfactory"
TSH 3.8
T4 14.1
Ferritin 26
Folate 6.3
B12 538
I don't feel satisfactory, I'm going in next week to chat about it, so any advice welcome.

Pleasemrstweedie Mon 01-Jun-15 15:47:55

You haven’t quoted the reference ranges for those results, which would really help and I’m a historian (albeit a hypothyroid one) not a doctor, but you look as if you’re in trouble.

On thyroxine, to feel well, your TSH should be around I and your FT4 should be in the top 25% of the reference range. If you join the ThyroidUK forum on www.healthunlocked.com, they will point you to an article by the top endocrinologist in the country which says this and which you can then wave at your GP. It's difficult for them to argue with stuff that's printed in their own journals!

Add that to the fact that your ferritin needs to be at least 70 and preferably a bit higher, to support the conversion of inactive T4 to active T3, your folate needs to be towards the top of the reference range and your B12 needs to be at least 500 and preferably quite a lot more and it’s no wonder you feel rubbish.

I’d say you are under-medicated and that you need to supplement iron (ferrous fumarate or similar), folacin and B12. I bet your vitamin D is too low as well. It usually is in these cases.

Bearing in mind that most people end up taking 125/150 mcg of thyroxine – how much are you on?

SirVixofVixHall Mon 01-Jun-15 15:58:12

Thanks for such a speedy reply. I didn't take down the ref ranges, she did tell me the one for ferritin and I was close to the bottom. Strangely I have just joined thyroid UK a moment ago, as I went to look at their site while waiting for posts. I'll go and look at the forum you've linked to.
My B12 was 538, but I've been taking a supplement on and off for a few weeks. I've just bought some iron, as I felt that might be low, I'm vegetarian and coealiac, so I assume I'm vulnerable anyway to low iron.
I'm on 50mcg of Levothyroxine, and have been for about 18 months/two years ish.

Pleasemrstweedie Mon 01-Jun-15 16:04:40

There is published research that says that starting anyone on less than 100mcg is a waste of the patient’s time, because of the length of time it takes to get up to a full replacement dose, following the protocol of re-testing every six weeks and adjusting the dose as necessary. You appear to have been abandoned by a GP who does not know that much about thyroid disease and who may have forgotten that the object of treatment is to make the patient feel better!

As a coeliac, never mind a vegetarian you are vulnerable to all sorts of deficiencies and being hypo actually compounds that. Your B12 is going in the right direction.

sanfairyanne Mon 01-Jun-15 17:13:08

why are you only on 50? were you subclinical to start with or did your results go 'in range' quickly?

either way, you are symptomatic so need more meds and aim to get your tsh as low as needed so that you feel better. i only say about your tsh as that is all your gp will talk about. the book 'understanding thyroid disorders' is useful to show your gp in this instance - tsh can even be suppressed if necessary.

i just increase my meds and order extra prescriptions as i cant be arsed arguing over tsh, but thats my personal decision.

Clarella Mon 01-Jun-15 17:23:20

I saw on thyroid U.K. The other day that a copy of pulse mag (for gps) had a q and answer session in in on thyroid things with Dr Anthony Toft who was a specialist in Edinburgh.

He has also written a BMA book on thyroid disorders.

In both he emphasised Tsh SHOULD be kept low - he said 0.5 in one and lower range in the other for patients to feel well. (And so t4 around 18-20)

He also said sometimes t4 needs to be higher (22-28) in a few people.

I do recommend getting the BMA book from Amazon simply to show that particular paragraph to the gp.

My gp has only described my ferritin as normal when it got to 80. I was borderline at 55. I was treated with iron tablets only as I had restless leg syndrome, however I am starting to feel well in a way I have never really felt! (It's now 130) Your ferritin need to be addressed - the endo I saw also commented my score was a tad low.

Clarella Mon 01-Jun-15 17:26:25

Really, being coeliac too, you should be being given iron on prescription. I'm taking 2x200 mg each day with a fizzy vit c tab. It's taken 6 months to get to this level.

50 levothyroxine is far too low.

If gp is resistant request referral - though really any endo would be a bit pissed off about doing the gps job.

SirVixofVixHall Mon 01-Jun-15 17:53:26

I was on 25mcg to start with. My TSH at the time was 22, so I certainly wasn't sub-clinical! I have bad palpitations so I was a bit concerned about going onto levothyroxine and suddenly having an even racier heart, so the gP started me at 25 and upped it to 50 as after a few months my TSH went up again. I've been on 50 ever since, and I've never had a TSH below 2.5 I don't think. Honestly I have felt exhausted for a decade. My GP asked for these bloods as my liver enzymes were raised a few months ago on my last routine test, and now they are "almost normal" he is satisfied. I have horrible jangling feelings in my legs, is that low iron then?
I haven't tested positive for coeliac as I stopped eating gluten and can't face eating it again, but I am certain I am. I react to even a speck of gluten, and I have other odd things that are connected with coeliac. So the GP doesn't give me any coeliac advice as I'm not down as coeliac officially. At some point i might muster the strength to do the gluten challenge, but as I feel so awful anyway the thought of feeling even worse has never been very appealing!!

AmyLeeha Mon 01-Jun-15 17:59:37

I also started Levo at 50 (TSH was 87 and I was diagnosed after nearly becoming comatose) because I'd been having palpitations and my dr was concerned that too high a dose would be a shock to my system.

So, starting low isn't always bad.

Corygal Mon 01-Jun-15 18:09:36

Sir vix 1) I love you, that dress made me and Mr C a fortune b) I am also hypothyroid and I beg you to get your Vit D levels tested. Tomorrow. Vit D deficiency is linked to Hashis, ie you often get it as well, and we have had a cloudy winter. My GP is testing everyone thanks to the rubbish weather.

Symptoms include tiredness and depression. Sound familiar? Take supplements, and get into the garden quick when the heatwave starts on Weds. To absorb enough Vit D through the skin, you need to have your arms bare as well as your face, which I never knew.

I am deficient in Vit D and plan to spend the entire English summer in the park flat on my back and as near naked as the local police will allow, it's the best way of fixing it quickly.

Massive good luck at the GPs. Ask for a referral to an endo.

Happy Sunbathing...

SirVixofVixHall Mon 01-Jun-15 18:29:44

TSH of 87 shock. Blimey Amy you must have felt so ill.
Cory! how nice to see your post, am so glad about the frock. I am taking vit D supplements, I am white as a sheet (celtic person) and so I lather on sunscreen and never tan. I did ask the gP to test it a few years ago and he said it was fine, but I wonder now what the level actually was.....I have vit D drops. I do notice I am even more tired on the days I forget to take it.

RubySparks Mon 01-Jun-15 18:47:13

I also have coeliac disease and hashimoto's. I have been unwell on and off for the past 5 years but probably had been hyper at times before that and iron deficient in childhood! I have been through all kinds of blood tests and in summary:

Low vitamin D was found so I took supplements
Low vitamin b12 so got injections (lowest was around 250 with bottom of range 180)

Started on 25mcg levothyroxne then went to 50, lots of going back and forwards to doctors upped it to 100 then back to 75, was recently told to reduce to 50 (I think due to high T4) and have never felt so ill!

All the symptoms that had been investigated over the years came back... Aches and pains in joints and muscles, headaches, fatigue, sore tongue, pins and needles/tingling in feet and legs. Back on 75 now and things beginning to settle down again. I would not have believed the difference 25mcg levo could make and I have no idea why doctors could not join the dots of symptoms and lower levo dosage.

Clarella Mon 01-Jun-15 21:11:19

Something an insightful Dr did for me many years ago was suggest an alternate day dosage eg 125/150. 125 was too low for me, I was excruciatingly constipated and tired, 150 had me hyper and food shooting through me, the slight tweak was what I needed. (I can really tell how I'm doing simply by my bowels!)

I'm now on 125 x4 days a week, 150x 3 and tsh 0.44 - bang on a good level.

I was on a brand which was inconsistent a few years ago, it led to a lot of trouble for me during pregnancy. It was recalled and withdrawn (TEVA) but I didn't find out till I saw BTF website around 10 weeks. My levels were hard to get right. I now do check occasionally on the British thyroid foundation website to check this hasn't happened with any other brands, though I think tearing us more rigorous now.

I do wonder if there had been occasional issues in the past.

Corygal Mon 01-Jun-15 22:31:51

Get another test, I would. You need to know what the levels are. M&S do some surprisingly nice yogurt with D added to it.

I've just my my levo put up. In the meantime, Mr Cory has his own endocrinologist, while I limp on with the local GP. grin

SirVixofVixHall Tue 02-Jun-15 11:29:11

I'm laughing at Mr C with his own endo. Lucky boy. How is he?
I can ask the GP for the ref ranges, which would give a clearer picture. She did tell me the range for ferritin and I was near the bottom end. Ditto folate. I will ask for another vitamin D test, as then I will have the full picture. I'm thinking of seeing a private holistic GP, just to get someone to really address how rough i feel all the time. I have two dds at primary school and it is rubbish for them too that I am always so tired.

SirVixofVixHall Tue 09-Jun-15 16:22:08

Saw a new GP today and he upped me to 100mcg Levothyroxine. I'm taking a liquid iron supplement too, so will just have to wait and see how things pan out. I really hope it makes a difference. I have 2 dds at Primary school, and a mother with dementia in a care home nearby, so I need to be functional for others as well as myself, and I'm not . I only manage because DH works from home, always cooks supper and makes breakfast for the dds too.

Pleasemrstweedie Tue 09-Jun-15 17:15:48

That's good news, but depending how sensitive you are , you might want to do that increase in 25mcg increments so it isn't too much of a shock to the system.

Clarella Tue 09-Jun-15 21:51:14

That's great, agree with Mrs tweed too.

How much iron is in the supplement? Is it prescribed? Make sure taken at least 4 hours after thyroxine.

I didn't manage to raise my iron a jot with 3 secrets of spatone; only x2 200 mg tabs worked over 6 months.

Clarella Tue 09-Jun-15 21:51:37

Sachets not secrets!

SirVixofVixHall Thu 11-Jun-15 13:01:32

It is a Viridian liquid iron, will check the dose. I tried spatone a while ago but it seemed to give me a racing heart, may have been coincidence though. I am going to up the Thyroxine dose slowly, at the moment 50mcg one day 75mcg the next, then 75mcg every day, then 75/100 until I get to 100mcg daily. GP wants a re-test in six weeks. He was really nice actually, said with my results there was certainly room for manoeuvre, and that he looked at the patient and how they were feeling and not just the bloods. I went in expecting to have to argue the case for increasing my dose so it was a real relief to have someone sympathetic.
I have pondered over changing to natural thyroid hormone, anyone done that?

Clarella Thu 11-Jun-15 17:01:57

That's great, stick with him he's doing it right. Remember you may be able to tweak dosage to 100/75 or 100/125 alternate days. I do think it can take a while to feel fully well though - 6 weeks may show in blood tests but you might not quite feel right. Or you might! If your Tsh is 1-0.5 you should be fine and see how you go for a while.

I'd take a mixture of t3/t4 over natural, but only after making sure my Tsh was really good and ruling out other issues such as ferritin, vit d, b12 and folate. People usually take t3 if they've been found to have a conversion problem.

SirVixofVixHall Thu 11-Jun-15 18:43:15

They didn't test my T3, they never seem to bother, so I don't know how much I have. I don't understand why they don't make thyroxine in patch form, for slow release, as surely having one dose a day is a bit strange for the body? I am always really done in at about 5 p.m. I literally can't properly string a sentence together, I'm struggling now, but later at about 11 I am much more articulate, I've wondered if that is to do with when the dose kicks in.

Clarella Thu 11-Jun-15 20:26:16

Technically the half life is so long there shouldn't be a kick in affect. If you went away and forgot meds you wouldn't notice for a couple of weeks. However the body has a natural circadian rhythm for t3 and lots of other things - cortisol too I think - so it could be other things.

Pleasemrstweedie Thu 11-Jun-15 22:43:07

That sounds more like adrenals - getting a second wind later in the evening. If course the adrenals struggle if hypothyroidism is not adequately treated.

SirVixofVixHall Fri 12-Jun-15 12:34:36

Does iron give one the runs? I am taking it, but my gut is not happy, could be coincidence of course

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