Advice please

[Hattii]

I would like some advice please. Last year I went to the doctors as I was completely exhausted and my joints were aching and I was finding it difficult to go up the stairs at the end of the day. The nurse practitioner suggested testing ferritin which was 28 so in range 13-150. I asked if she could test my thyroid and when she looked at previous results of tsh which I had been told were fine she mentioned they had been at 7 and 6 so might be worth testing. I saw the doctor in August with the results which were tsh 7.6 range 0.4 - 4, which she said was borderline but was put on 50mg levothyroxine as ferritin had also gone down to 18, but was still in range. I wasn't really keen to take it. There is a family history of hypothyroidism. I was given iron tablets to take for a short while. The doctor requested blood tests next to be done in November and to include antibodies but as the tsh had gone down to 2.5, the lab wouldn't do it. They didn't test ferritin again as it had been in range in the August. Then my periods stopped in Oct/Nov. I saw the doctor in February who said it wasn't connected however I had read that it was a side effect of levothyroxine and she agreed I could stop the levothyroxine which I did and my periods have returned. I had a blood test at the beginning of April and the tsh has gone up to 12.6 so have an appointment to see the doctor next week. I don't have any print outs of the results. The lab were asked to test vitamin d and antibodies but refused again to do either. How do you get them to test for this as they are refusing when tsh is in range but also when it is high? I asked if I could see an endocrinologist but was told there was no need. I don't want to take levothyroxine if it stops my periods but I am exhausted without it and my joints ache but should I be taking a smaller dose? Also the tsh seems to have shot up and have I damaged my thyroid by taking the levothyroxine so that now it is functioning even worse than before. Thank you for any advice as I am seeing the doctor on wed.

[SlowDragon Administrator]

As you can not get lab/GP to do these tests, then like many of us, you can get them done privately

thyroiduk.org.uk/tuk/testin...

The most popular test is the full Thyroid & vitamin bundle from Medichecks or Blue Horizon - £99 (if you pick your moment to order or sign up for emails they often have money off offers)

You need to know FT4, FT3, antibodies, vitamin D, folate, B12 & ferritin - not just TSH

Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's (by far most common reason for being hypo in Uk) then you may find adopting 100% gluten free diet may really help reduce symptoms, and possibly lower antibodies slowly over time too. Some also (or instead) find other foods may need avoiding, dairy, soya and nightshades (tomatoes, peppers, potatoes) being the common ones. You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten or other food intolerance

You might find improving vitamins & changing diet enough to reduce symptoms

Vitamin and minerals levels are very important. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

Selenium supplements can help improve conversion of T4 to T3 and may also lower antibodies


thyroidpharmacist.com

[Hattii in reply to SlowDragon]

Thank you very much. I will look into this.

[bluebug in reply to Hattii]

If you do do the rests privately and they show things like elevated antibodies take a copy to give to your GP. This is because the labs are refusing to listening to him/her and s/he needs proof to increase medication.

Both Blue Horizon and Medichecks used approved labs and they are often the same labs as what the NHS use.

Oh and btw an in range ferritin doesn't mean it is high enough. My present GP practice likes to see ferritin 30+, some endos like it 50+ and derms specialising in hair loss/trichologists like it mid-range. On this forum we tend to follow the latter.

[Hattii in reply to bluebug]

Thank you, I will do this. It is good to know that the GPs will acknowledge these results. It just seems strange that a lab refuses a doctor's request and that patients have to fund this themselves. I stopped taking the iron pills but as unaware of ferritin levels maybe I should start again. Thank you.

[bluebug in reply to Hattii]

Not all GPs will but if they are sceptical of your test results they will repeat those individual tests themselves.

CCGs set guidelines on what the labs can test so if your GP for example ordered another vitamin D test 3 months from the previous one, then as you are an adult the lab would refuse to do the test as they won't get paid for it.

BTW If you are going to pay for private testing or have an NHS blood test where your ferritin level is tested or you have a full blood count, then you need to leave a week between taking the iron supplements and the test. It is to ensure all excess iron is removed from your system so the test results aren't skewed.

[Hattii in reply to bluebug]

Thank you, they have never tested vitamin d before and was on the doctors request but they just didn't test it. Not sure why.

[bluebug in reply to Hattii]

Senior GP or lab probably decided you don't fit the criteria for vitamin D testing as there were other known reasons why you feel awful. That's just a guess btw as only a few in the medical profession will admit why they do and don't do certain things.

[shaws Administrator]

With a high TSH of 12.6 plus all of your symptoms, I'd advise taking levo in the meantime until you gradually learn more about hypothyroidism. Maybe when your dose was too small and when it is optimal your monthly cycle will return to normal. Usually, it is more common to have very heavy periods which is a clinical symptom of hypo.

They should test for antibodies etc now as your TSH is out of range. The top of the 'range' is around 5. You are well over that number now. Also if you have an Autoimmune Thyroid Disease aka as Hashimoto's the treatment is the same as for hypothyroiism, except going gluten-free can help reduce that attacks of antibodies on the gland.

Blood test has to be the very earliest possible, fasting (you can drink water) and if on levothyroxine, allow a gap of 24 hours between the last dose and the test and take afterwards.

Always get a print-out with the ranges for your own records.

Doctor should also test B12, Vit D, iron, ferritin and folate. All of these have to be optimal too.

[Hattii in reply to shaws]

Thank you, I have had the B12 tested last November, I'm not sure of result but the doctor said it was within range but it seems the lab just refuses to test anything else so maybe having it done privately is the way to go. I have started taking the levothyroxine again last week before I see the doctor as I was so tired and I need to be able to work. My cycle which has come back as the levothyroxine was out of my system is very heavy so it sounds as you say that it must be a symptom. I just don't feel happy taking something which is stopping it and the doctor seemed totally unaware that this could be a side effect. She said that it is two different systems so they shouldn't affect each other. I know I probably need the 50mg but was going to ask for 25mg. Thank you for your advice.

[bluebug in reply to Hattii]

Your GP is talking nonsense all the body systems are connected. Your body doesn't want to fall pregnant and not be able to nurture a developing fetus.

I suggest as your GP has a hazy understand of physiology and biochemistry you make sure you learn as much as possible about the thyroid, hypothyroidism and essential vitamins and minerals. Start on the main thyroid UK website, read the links people post for you and follow the forum. It is hard at first but with rereading things over months eventually things make sense.

[shaws Administrator in reply to Hattii]

Another link and other topics at the top of the page. Some links within them may not work as it is an archived site as Dr Lowe died through an accident and is sorely missed. He wasn't afraid of organisations' stupid methods.

Thyroid hormones affect every singly thyroid receptor cells from head to toe (we have billions) and they all need T3 - not T4 (levo) which is inactive and if given in an optimum amount we convert to T3.

web.archive.org/web/2010103...

[josie-n]

You can request a private referral to see an Endocrinologist as I was forced to do, he then allowed me to be treated on the NHS...it was well worth the £160! I also had horrendous side effects from Levo and wish it would be banned as it is nothing short of poison! Good luck x

[Hattii in reply to josie-n]

Thank you. I will ask the doctor about doing that privately when I see her next week. The side effects do worry me and I would rather not take it.

[Stourie in reply to Hattii]

The majority of hypo folks do very well on levo. Just people like us who don't and look for other answers to our problems.

Jo xx

[Hattie007]

Hello Hattii. I am very new on here so can't offer as much expertise as everyone else but when I was first diagnosed 9 years ago with autoimmune hypothyroidism, my periods had stopped which was what led the doctor to take notice of me- they came back after a few months of levothyroxine. I'm just saying that it could the being hypo that stopped your periods? I know you said they came back when you stopped the levo- maybe just a delayed response to actually taking the levo? Good luck and all the best.

[Hattii in reply to Hattie007]

Thank you, it just seemed that they stopped about two months after taking it and started again two months after stopping it. I do know what you mean though.

[Jeppy]

Hi Hattie. I'm new at this too and finding it a bit if minefield, just read Diana Holmes Tears behind closed doors which has moved me on a bit, there are good choices of helpful books to read on here

Wishing you well and to ask Josie and all......

if you dont therefore take the Levo (as it seems to be down rated by many) which tablet do you recommend and how to get it please)?

Best wishes j