Is my GP being fair with my TSH levels?

[Pippstar]

Hi all,

New to this site, but feeling at my wit's end and didn't know where else to turn.

So in 2013, I had a blood test checking my TSH levels, as I've got a mum and two aunts with hypothyroidism. It later transpires that the level was 5.7 at the time but my doctors never told me about it and over time I guess it was forgotten about.

In December last year (2014) I went back to the doctor and said look doc, I feel dreadful. I am 29years old, female, a keen runner, and only a couple of lbs overweight! I'm a vegan and eat a very healthy diet. I don't think I should be feeling this....well, crap? Tired, grouchy, no energy, dry and lifeless hair and skin.

So he had a dig through my records and found this 2013 result but said it was too old to now act on so I'd have to go back for another test.

So December 14 I have a blood test again, and got my results which the GP said was now normal, and dismissed previous result as a possible virus. I wasn't at all happy to just go away and forget about it because I still felt terrible! So...he said we'll send you can come back for another test in March.

So March this year, got my results back, lo and behold TSH is now 6.3 and he puts me on levothyroxine 25mcg. He will only give me a month's worth at a time for now. I went for a check in July to test how I was getting on with the medication and it shows level is now 4.19. I had started to feel a bit better actually, but in the last couple of weeks have started to go downhill again.

I am due for another check in mid October, but in the meantime I feel that my dose could be higher to get that TSH down a bit more, but the GP says it is fine now??

Am I right in thinking we should be aiming for lower TSH than 4.19? I just feel my doctor is not interested!

Thanks for your input, id love to know if anyone else has had a similar experience and how it worked out.

[gabkad]

Pippstar, check your dietary sources of iodine and selenium. And zinc. Many vegans are low in these and there is an adverse impact on the thyroid.

At any rate, a 25 mcg dose of thyroxine is not a real dose. People need to be started on 50 mcg and tested after 6 weeks to see what effect this has had.

But since you are a vegan, check the diet first.

Ask the doctor to check your Vitamin D, folate, ferritin and B12 levels as well. I'm not in the UK, so don't know if iodine and selenium will be tested on NHS. Zinc and copper can be.

The iodine spot test can be ordered privately. As also can the selenium. Other people around here know more about private testing.

[Pippstar in reply to gabkad]

Hi Gabkad and thanks for your reply. I appreciate what you are saying re veganism, although I genuinely am very careful with my diet and eat a wide variety of foods for nutrients. I also take a vegan multi-supplement which contains iron, folate, B and D vitamins. However I did also ask my GP to check my B12 levels. He said it was fine but actually I thought it was low (220) and so I now take a 5000mcg supplement every day. That oughta do it!!!

Regarding iron, I give blood regularly and have never had a problem and they always check iron, so have assumed that means this is fine?

I am not sure about iodine so I will order a test online thanks for that, are there any you recommend?

I am disappointed that 25mcg is such a small dose when I still feel so awful. What do you think about the current TSH level?

[gabkad in reply to Pippstar]

You don't post ranges for the TSH. Usually ranges are from about 0.5 to 5.0. Some small variance depending on lab. So at over 4.0 and based on symptoms, you are hypo. Your pituitary is beating on your thyroid gland to do more. But for whatever reason, your thyroid gland can't do better than it's doing.

The thing about, let's say, eating some dulse every day and figuring out how you can get selenium (this is not an essential nutrient for plants. If it's in the soil, it's in the plant but many soils don't contain anywhere near adequate selenium for this to happen. Brazil nuts are hit and miss, again depending on what is in the soil) is that most of the iodine we consume is excreted in the urine. It takes a while to load up the thyroid.

How long have you been eating a vegan diet?

Good on taking the B12. At 5,000 mcg per day, after 2 months, you can reduce your dose to 1 per week. It's expensive and what your body doesn't use is excreted in the urine. That's pricey pee.

[Pippstar in reply to gabkad]

You're so helpful thanks I just ordered another lot of the B12 so might reduce to once every other day as I've been taking for over 2 months now.

The range my doctor gave me for the TSH was between 0.5 - 4.5. So even by his range I am right at the top end there, so am I right to push for a higher dose? I very much get a "go away and stop bothering me" vibe when I go in there!!!

I've been vegan fully since January this year but vegetarian for much longer. I do worry, hence the multi vitamin which is a specific vegan one.

[gabkad in reply to Pippstar]

Yes, of course, suggest to this doctor that you may do better if the dose was higher. This is supposed to be teamwork. You are doing your bit. Or change doctors if possible. Someone had to have graduated at the bottom of the class.....

You could ask/demand to see an endocrinologist. And get fT4, fT3 tested as well but antibodies in case you have an autoimmune form of hypothyroidism.

[Pippstar in reply to gabkad]

Hi gabkad,

can you recommend anywhere I can test my iodine levels? I may reduce my soy intake also, as I currently use soy milk every day in my tea! Other than that, I do not use much, but it may not be helping?

[gabkad in reply to Pippstar]

You'll need to start a new post with the question about iodine testing. Other people on the forum have had theirs tested. I don't live in the UK.

[greygoose in reply to Pippstar]

Pippstar, you really ought to stop the soy altogether. If it's unfermented - like soy milk - then it is very, very bad for thyroids.

To begin with, it is a goitrogen, which means that it impedes the uptake of iodine by the thyroid gland, making it very difficult for the gland to produce hormone.

But even if you take thyroid hormone replacement it's bad, because it has a secondary effect. It impedes the uptake of the hormone by the cells. So, it won't matter how much you have in your blood, it won't get into the cells where it's needed.

I could go on at great length about how unfermented soy is bad in so many, many other ways, but I'll restrain myself. Suffice to say, you'd be much better off without it.

Hugs, Grey

[Pippstar in reply to greygoose]

Hi Grey,

It's something I had never even thought about but I will switch to oat milk starting now, and I finished the last of my tofu last night! I will have to have a look around the vegan online community for alternatives, as I don't want to risk anything making my situation worse!

Did you have any ideas about testing for iodine levels privately?

I really wish I could afford completely private healthcare! I feel like the NHS really dropped the ball here

thanks again!

Pip

[greygoose in reply to Pippstar]

I'm afraid I Don't have any ideas about testing anything. I Don't live in the UK, and things are different here in France. Sorry.

I have no idea what vegans eat. But if you were eating soy products for protein, you should be aware that human stomachs can't absorb the protein from soy. So you weren't getting any protein, anyway.

Other sources of protein, I believe, are things like lentils, and dried peas and beans. But be aware that these are also goitrogens and may not agree with you. So, monitor yourself when you're eating them. Do they make you feel any worse? Do you have flu-like symptoms a couple of hours after eating them? Be aware of your body at all times, and how it is reacting.

[Clutter]

Welcome to the forum, Pippstar.

The goal of Levothyroxine is to restore the patient to euthyroid status and for most this will be when TSH is just above, or below 1.0. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] for a full copy of the Pulse article if you would like to show it to your GP when you request a dose increase.

25mcg is a starting dose and should be increased by 25mcg every 6-8 weeks until symptoms resolve, although it should be borne in mind that symptoms may lag behind good biochemistry by a couple of months. Arrange early morning and fasting (water only) blood draws when TSH is highest and take Levothyroxine after the blood draw.

If you get a 'don't bother me' attitude or refusal to increase dose see another GP at the practice, or change GP. Hypothyroidism is a life long condition and needs managing properly, TSH high in range means you are still hypothyroid, not euthyroid.

Take a B complex vitamin with B12 to keep the other B vits balanced.

[Pippstar in reply to Clutter]

Thank you Clutter!

I did actually phone my GP after my last "treated" test (the one showing TSH level of 4.19) and told him about Thyroid UK and it saying I should be aiming for TSH less than 2.0 and he said "well get them to call me then"...he seemed very annoyed about the whole thing. I think he is newly qualified and does not appreciate being second-guessed, but I am just trying to do what is best for my health! I don't know how long I can continue feeling like this, every day I wake up and want to call in sick for work. It is a real struggle just to get through a day, and I've been feeling super emotional too

I have emailed Louise for a copy of the Pulse article, thank you. I also think that to leave it 3 months between each of my blood tests is a bit long going from what you have said, maybe every 6 - 8 weeks would be better?

Pip

[Clutter in reply to Pippstar]

Pip, 6-8 weeks after a dose adjustment is sufficient to see how thyroid levels have responded. Patients shouldn't be left over or undermedicated any longer than necessary. However, more frequent testing isn't going to get around the problem of a doctor who thinks TSH 4.19 is fine for a patient on Levothyroxine.

Your GP doesn't appear to understand the correlation between undermedication, high TSH, and hypothyroid symptoms. If he did, your dose would be increased until symptoms improved and TSH lower. If he had treated you properly and you felt well, you wouldn't have turned to this forum for support.

His attitude sucks, frankly. Probably best to see another GP at the practice, or a new practice, one with better knowledge of hypothyroidism and a better attitude to doctor-patient-partnership.

[eeng]

Ask your GP whether you were tested for thyroid antibodies. If you tested positive then you will find that your thyroid gradually stops working due to the antibody attack. This can happen in fits and starts, with you getting times when you go a bit hyper followed by times when you find you are even more hypo, or it can happen gradually over months or years, in which case you will be seeing the doctor every 6 months or so for an increase in your medication to keep up with your failing thyroid. As an example I have gome from taking 50mcg of Levothyroxine 2 years or so ago to now taking 150mcg (this might be a full replacement dose).

If you don't have the antibodies you should find a stable amount of medication (definitely more than you are taking now) that you are comfortable on for years to come. You have to become your own thyroid expert. Doctors come and go but you have to cope with your own thyroid for life. Don't let the incompetence of a GP blight your health.

[Pippstar in reply to eeng]

Thanks eeng.

He makes me feel like such a time-waster, I feel like I need to "arm myself" just for a visit to the GP!! Otherwise I just get brushed off.

It does make sense what you are saying about fits and starts and it getting better and worse randomly.

I don't think he did test me for the antibodies no, but I think my problem is genetic, because my mum and two of her sisters are also hypothyroid. I'm not sure if there's is autoimmune.

[Pippstar]

Thanks!

How would I get T3 and T4 tested though? Is it possible to get referral to an endocrinologist?