I posted about a week ago. I am on thyroxin 100mcg for hypothyroidism for last 30 years. Letrozole and Calcium/Vitamin D3 (for breast cancer diagnosed 2 years ago). Did not do well on thyroid meds so Dr agree to change to Eltroxin many years ago. Recently back on Levothyroxine as Eltroxin no longer available. I know the letrozole causes bad joint pains but I exercise to relieve it and can cope with that.
Suffering bad symptoms but not every day, although becoming more frequent. Low mood, sadness, lack of concentration, forgetting words in conversation, tinnitus much worse, light headed, tingling in arms and legs, some days so tired I just feel ill.
Not working at the moment but hope to go back (Maths teacher). My blood test results are below. Dr said all normal. I told him I had typed out all my symptoms under Mental and Physical for him to look at and tried to show him but he just kept saying blood tests all normal and obviously did not want to hear my symptoms. I know he is very busy and overworked. I have only seen him a couple of times as my GP left.
Please help me, I just want some quality of life. Print out exactly as below.
Thyroid Function test - (RCW) Normal No Action
Serum TSH level 0.55 (0.05 - 6.00 mU/L)
PLEASE NOTE CHANGE OF REFERENCE RANGE FOR TSH AND FT4. This is due to a change to analytical methods for both analytes.
PLEASE NOTE CHANGE OF REFERENCE RANGE FOR FOLATE AS OF 16 JANUARY 2012. This is due to a change to analytical methods for all these analytes.
Ferritin (RCW) Normal No action
Serum ferritin 20 ug/L 11.00 - 200.00ug/L
He also took a load of other tests (I did not request these) for Kidney, Liver function. Bone Profile which were all normal. Haven't a clue what result below is and he did not mention it but I will look it up after writing this.
Please could you advise me on the best way to proceed as I am not prepared to struggle on any more. I have never seen an Endocrinologist but have bought the pack from Thyroid UK and would now be prepared to travel to see one of the recommended Drs.
Thank you for any advice or help you can give regarding my results etc..
You appear to be under-medicated to me. For people who are suffering from hypothyroidism, Free T4 needs to be roughly in the upper quarter of the reference range - so for you that would be about 15 pmol/L or above.
It would help if you had a Free T3 level, but few people can get those out of their GP, so they get tests done privately. Self-medication and private testing is getting more and more common for hypothyroid people because the NHS keeps us sick.
But something that will have a huge impact on how you feel is your mineral and vitamin levels, and they are not good.
Vitamin B12 - yours is far too low for good health, but is too high to get any help from the NHS, so you will have to treat yourself. The best B12 to take is sublingual methylcobalamin - search for it on Amazon, do some research, read the reviews, then shop around - Jarrow is a reputable brand, but please don't just take my word for it. To make substantial improvements you will need to take a high dose for a while - 5000mcg per day - stick it under your tongue and let it slowly dissolve rather than swallowing it. After a while you could lower your dose to 1000mcg per day. Vitamin B12 is one of those vitamins that gets excreted in urine if you take more than you need. It isn't toxic.
The problem with the above advice is I simply have no idea how long you should stay on the higher dose, so I hope someone more knowledgeable will come along.
Your folate range doesn't have an upper limit. I'm not sure if that is normal practice these days or not. When I last got my folate tested the range was 4.6 - 18.7ug/L. Assuming your range should be somewhere in the same ball park you can see that yours isn't that great. It needs to be high in the range for thyroid patients. I don't know anything about the best types of folate supplements to take. Hopefully someone else can give you advice.
Your ferritin (iron stores) level is appalling. In order for your body to make good use of the thyroid hormone you actually have (or take), ferritin needs to be much higher - about mid-range or slightly higher is good for ferritin. So on the range you were given your level needs to be about 110 ug/L.
There are lots of different ways to take iron supplements - some people find them hard to tolerate, so some experimentation might be needed. The kind I use personally (when necessary) is ferrous fumarate 210mg tablets, taken 3 times per day. They are bought in boxes of 84 tablets (enough for 28 days) for about £4 a box from a local pharmacist. Boots won't sell them without a prescription but other pharmacists will - if you have a problem, shop around.
Take each iron pill with 500mcg - 1000mcg of vitamin C - this helps with absorption of the iron and helps undo the constipating effects of the iron. If you can tolerate iron on an empty stomach, then this is good. But many people have to take the iron with food.
Don't keep taking iron indefinitely - too much iron is not good for you. Regular testing is a good idea.
I should have mentioned Vitamin D as well. Many thyroid patients are deficient or low in this, and getting tested is a very good idea. I was only mildly deficient but I was amazed at how much better I felt after I started supplementing. (Take vitamin D3 supplements if necessary, NOT vitamin D2).
Firecrest, The alternative therapy centre might be more helpful than your disinterested GP. Perhaps there's another GP you can see at your practice. If your GP requested FT3 the lab probably declined to test as your TSH is not suppressed. You can order private tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...
An increase in Levothyroxine will likely suppress your TSH without increasing your T4 much. If you can persuade a GP to prescribe some Liothyronine (T3) it would probably be beneficial. You might consider self medicating if your GP won't prescribe it.
Humanbean's covered everything. Your lab range for B12 is shocking low. B12 needs to be >500. 5,000mcg methylcobalamin daily for 4/6 weeks then 1-2,000mcg daily should raise your levels and ferrous fumarate taken with vitamin c for low iron. Good vitamin D levels are required for T4 to T3 conversion. Ask your GP to test or use City Assays in the link above.
Thank you both for replying, you have helped so much. I will definitely research buying B12 and start taking it asap as well as Iron & Vit C. Dread the thought of going to Drs again for re-test. Maybe he will refuse? Well, will cross that bridge etc.
Thank you for including dosage etc, you have both given me the confidence to do this now.
I also think it is maybe time to organise a visit to one of the recommended Endo's on the Thyroid UK list and will definitely get my T3 tested privately.
I will post here again to let you know how I get on.
P.S. He did test for D3:
Vit D 25 OH Normal No action
Serum 25 HO Vit D3 level 50.7 (>50.00 nmol/L)
so I am just in the range (well it is not a range is it !!!)..........although I am taking Calcium and D3 supplements prescribed by my cancer care team. I will mention this result to them at my next appointment. Letrozole does affect D3 levels (I think)
I suddenly feel hopeful and empowered again (not a word I have ever used before but that is how you have made me feel)...........I just want some quality of life, especially after surviving and dealing with the cancer so well, thank you again.
Don't forget folate supplements. Iron, folate levels and vitamin B12 apparently have a complicated relationship with each other and they should all be considered as a trio rather than individually :
Firecrest, VitD optimal range is 75-200 and high in range is best. If they won't prescribe more ask if there is any harm in self supplementing to boost your levels. VitD toxicity is rarely experienced supplementing <8,000iu daily.
And a reminder that iron should be taken 4 hours away from Levothyroxine.
Fantastic!!!!! Thank you so much for all your help, you have both been absolutely brilliant.
Just off to continue research and order supplements today. I feel very optimistic about all this.
in reply to
Hi firecrest all the above is brilliant advice re thyroid but it just crossed my mind,having also had bc and 5 years on arimidex in my case, that it could also be related to the bc medication,making you feel a bit odd.I tolerated arimidex well with what I thought was no real side effect problems apart from bone thinning,but after coming off it, it took about a full year to realise the difference in how I felt.more like my old self again.just a thought! Hope things improve soon
I am sorry you have another doctor who appears to be ignorant. Not uncommon in thyroid gland diseases.
Just to say that if you do supplement please take them 4 hours apart from levo. It is a pity that Eltroxin has been discontinued at present as it seemed to suit a lot of people. We just get generic levo now and many do not do well on them.
You could probably do with some T3 added to your T4 but your other deficiencies also have to be taken into account.
Thank you shaws. I do agree with you regarding the Eltroxin. Dr was cynical about prescribing but I pushed it and at least she let me try it and so enabled me to have a few years feeling quite well!
I feel quite nervous about the T3 but think I may try it after getting a private blood test. I may be back on here to bother you all again for the best dose etc.
I am so touched and grateful for all your replies.
Generic levo was awful for me (and my family as they suffer too when you're so unwell). The Endo then added some T3 to my T4 and I felt so much better but I was phoned at home by the Thyroid Nurse who (after they had taken my bloods) phoned to say you have to stop the T3 as your TSH is undetectable. I said 'in no way am I stopping T3' so I was told to reduce my T4. Then by chance because I then had to take 25mcg T4, the chemist gave me Eltroxin 25mcg and that improved me even further. So much so I asked him to keep his stock of 25mcg of Eltroxin for me and he did.
When I had my final appointment in the Endocrinology Dept, the nurse was absolutely astonished by how well I looked and the Endo put in her letter to GP to prescribe Eltroxin and T3. I am now on T3 alone and am fine. Why have MP not been able to produce Eltroxin? Sounds a bit peculiar. Maybe they make more money from generic levo as more patients now have less and less options.
So, it is really amazing how different tablets can make you well or really unwell.
yes this is really true, it comes to the different fillers who block absorption of the medicine in your body.......esp if you not tolerating that substance....and some are known to block the absorption and still they produce it like that....
It's made for the masses - not individuals but the Endos/doctors seem to be unaware of this phenomenon and the patients continue to suffer because their 'TSH' is in range!!!
my doc knows this hehe but still he doesnt know too many other things hehehe
Yes, when researching further I have realised different brands can affect people very differently. Unfortunately Drs are extremely sceptical. I have found a chemist who stocks the Mecury Pharma thyroxine 100 mcg which I believe is identical to Eltroxin? I have been on Actavis 100mcg over the last few weeks and have just realised this may be causing some/many of my symptoms.
I have sent my blood away to Blue Horizon today for thyroid profile advanced (includes T3 and antibodies) and Active-b12. I will be very happy If they come back normal! At least I can now start on B12 and folate supplements then iron and vitamin C. Thanks to the people on here, I feel I can do something about my condition. Feeling well today
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but that is how you have made me feel)...........I just want some quality of life, especially after surviving and dealing with the cancer so well, thank you again.
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