New to the board, my story and blood results

[Em_Lou]

Hi all,

I have recently found this board and wish I had found it sooner. I am 26 and have been taking Levoythroxine for about 5 years. I was told I was borderline hypo and had symptoms including extreme tiredness, anxiousness, sweaty hands etc. and put on 25mg, then 50 mg, then 75 mg, for the last 4 years I have been taking 50mg daily.

I have not felt 100% for a long time (all the associated symptoms), even when taking the thyroxine. Then about 4 weeks ago the symptoms got a lot worse (bones were in agony, shaking, sweating, anxious, racing thoughts, night sweats, breathlessness, very confused, emotional - I was in a mess!). One night (I take mine at night), I did not take my thyroxine...symptoms reduced dramatically ....next night I took 1/2 a thyroxine tablet (symptoms came right back).

I went to the doctor (a new doctor for me as I have just moved location)who gave me a blood test (after not taking thyroxine for about three days) and advised me to stop taking thyroxine for 4 weeks then repeat a blood test....today it is just over 4 weeks I went to another doctor (within the same practice) to get the slips for the blood, but this new doctor advised I should wait an additional 2 weeks as 6 weeks will give more accurate results.

Since stopping the thyroxine symptoms I have had for years have dramatically reduced, no major breathlessness, no heart palpitations but some still remain just not as severe such as the occasional night sweats, slightly sweaty hands and feet in the day , tiredness, pins and needles and memory problems/forgetfulnesses (which has been a big issue for me for years, very bad memory problems) and dry skin, but overall a better than the state I was in four weeks ago.

I was told four weeks ago, the results of my blood test were 'normal' but to buy some over the counter vitamin D tablets, I asked how much and she said whatever the pharmacists recommends. (previously I was prescribed vitamin D tablets but the old doctor told me to stop them - without having my bloods redone.)

Anyway here are the 'normal' blood results, any help with interpreting this would be much appreciated.

Free T4 = 15.4 pmol 9-24

TSH 4.0 mul 0.35-50

Ferritin 41 ugl 15-250

15 -OH Vitamin D 51 nmol 75 - 200 (Heritage is black Caribbean if that makes a difference)

and this

Thyroid Peroxidase SBD * 509 iu/ml 0-50

then a note saying: >75 IU/ml = raised antibody level, suggestive of autoimmune thyroid disease.

Also the doctor I saw today mentioned that my white blood cells were low.

[galathea]

Hi, em lou, Welcome to the wonderful world of thyroid :-(. Forums like tis are really useful and better to have found this one now, than not at all.

The vitamin d levels are too low, and the black Caribbean heritage makes it harder to absorb the sun... You need some vitamin d3 tablets and to et you levels nearer the 80 mark, although even this s bottom of the range.

With a tsh of 4 and positive antibodies, you need replacement meds, because your thyroid is slowly dying off. It can take years and you gradually slow down. However, the particular doctor you saw, is obviously a slave to the myth of the tsh and will be waiting for it to increase over 5 before treating you.

Previously the meds may simply not have suited you. It seems that often people have problems with the forumulations of the synthetic meds, so they have to try different brands until they find one which suits them.

Suggest you have a look on the thyroid uk site for a better overview. throiduk.org.uk

Xx. G

[Em_Lou in reply to galathea]

Hi G,

Thank you for your response. I will try to get my hands on some D3 tablets... I'm currently taking high strength vitamin D, 25.0ug... which is apparently 500% of the RDA.

Thank you for the link I will check it out.

So overall, despite feeling better off the thyroxine, as it looks like I have an autoimmune disease, I will ultimately have to re-start taking some sort of replacement hormone. Is this correct?

[galathea in reply to Em_Lou]

Hi,

Yes, eventually, when your thyroid simply can't produce enough hormones, no matter how hard it is pushed you will have to replace the missing ones with tablet form and this will be for life.

It sounds awful, but once you get on to the correct dosage of the correct medication, its simple enough.

A quick word of warning, About 15% of people who are given levothyroxine don't do well with it and we find our way to forums like this one. The 85% who do do well don't bother to find forums, why would they need one? So, although we go on a lot and you will see us complaining about the treatment we get, always bear in mind that we are a minority group. With luck, you maybe one of the 85%.

Xx. G

[humanbean]

Hi Em-Lou,

Welcome to the forum.

Your ferritin (iron stores) is far too low and I think this will be contributing to your breathlessness. The middle of the reference range you have given is approximately 130. Your result is only 11% of the way through the reference range which emphasises the fact it is really low and must be making you feel awful. Since your ferritin is within the reference range your doctor is unlikely to be interested in prescribing supplements for you. However you can buy prescription strength supplements for yourself and should aim to get your ferritin to approximately mid-range. Please note that some people say you should get it to 70 - 90, but I think it ought to depend on the range you were given, since the ranges vary so much. Please do your own research on this and make your own mind up.

The book that tells doctors what they can readily prescribe is called the British National Formulary (BNF) and it is available online. For the info on iron supplements see this page and check out the various subsections as well :

evidence.nhs.uk/formulary/b...

For many people, iron is hard to tolerate so be prepared to experiment if you have problems and ask on here for more suggestions if necessary. The ones that I buy are ferrous fumarate 210mg which I buy in boxes of 84. This is enough for 3 doses per day for 28 days. Boots won't sell them without a prescription but most other pharmacists will - shop around if you get refused. I buy from Lloyds without a prescription.

Take each pill with 500mg - 1000mg of vitamin C. Iron supplements have a tendency to cause constipation. Vitamin C in high doses has a tendency to cause diarrhoea. By combining them both you can keep things moving. The Vit C also has the advantage of helping the body to absorb the iron, and as an added bonus is very good for your adrenal glands (which tend to suffer a lot in people who are hypothyroid).

If you absorb iron at a normal speed you could expect to repair a deficit in about 3 - 6 months. It is dangerous to take more iron than you need because an overdose is poisonous. Please arrange to get ferritin tested again after you have been on iron for 2 - 3 months to get some idea of how fast you are improving your levels. Stop taking iron for 5 - 7 days before testing.

If you have gut problems you might find your ferritin is not going up very fast. Mine went from 21 to 70 in 18 months and I'm still hoping to get it closer to 90 or 100.

Good luck!

[humanbean in reply to humanbean]

I forgot to mention...

Please leave a four hour gap between taking thyroid meds and taking iron.

[Em_Lou in reply to humanbean]

Hi Humanbean, thank you for the advice. I was taking 305mg of perscribed Ferrous Fumarate earlier this year for about 3 months.... but then the doctor removed it from my repeat prescription...I will definitely take with Vitamin C...thanks for the tip.

I am just skeptical about restarting all these tablets and vitamins because despite still having some symptoms.. I'm feeling better than before when I was talking vitamin d, ferrous fumarate and levothroxine .....but with the guidance of this board I am willing to give it another shot in a bid to finally be rid of all symptoms.

Emma

x

[humanbean]

With regard to your antibodies...

You obviously have autoimmune thyroid disease or autoimmune hypothyroidism or Hashimoto's Disease. These are three different names for the same condition. Americans tend to refer to Hashimoto's a lot of the time and you will see it a lot on thyroid related websites. British doctors tend to refer to autoimmune thyroid disease. I think a fair number of British doctors have no clue what Hashimoto's Disease is, so it is a good idea to stick to the terminology they are familiar with when dealing with them.

One of the problems with autoimmune hypothyroidism is that the thyroid test numbers fluctuate as the antibody levels fluctuate and this makes dosing with thyroid medication difficult.

A lot of people who have positive antibodies find that they feel much better if they follow a gluten-free diet - it helps to diminish the number of antibodies.

A useful link - the site owner has Hashimoto's too :

thyroidpharmacist.com/

The author of the site has written a book - it gets a lot of very good reviews.

[Em_Lou in reply to humanbean]

Thank you for the link and about using the doctors terminology as my doctor today was saying autoimmune disease and I said do you mean Hashimotos? She laughed and said yes but that's the silly name for