Hello, I've posted only once before but now have decided to write all my results to see if someone has advice for me.
Jan 2015. TSH 76.57 (0.34 - 5.6) the doc never even made a comment about how high this is. Had been feeling crazy for a while. Was started on 25 Levo then 50 and now 75mg
Feb 33.90
Mar 8.2
Apr 0.18
I am now below level (0.34 - 5.6) but still have terrible heart pain, Palpitations and worse of all insomnia. I've resigned from work as I am a social worker in mental health with complex cases. I'm sad I had to stop work but I literally can't cope without sleep and the brain fog.
I went to doc and had my bloods done and herewith results for:
Ferritin 67(110-336)
B12 460 180/914)
Folate 6.0 (3.1-19.9)
Is the heart pain angina? Is there anything to improve this and most importantly the insomnia. I've started taking pills every night now and I know this is really bad. (Not prescribed by doc BTW).
Doc has now decreased dose 2 days/week to 50 and I tske 75 rest of week
Any help or advice greatly received as I feel like a different person. I've disappeared.
Written by
Wellesley94
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I am very sorry you are so bad you've had to resign from your job. In a way it might be helpful as you can concentrate on getting some semblance of good health return.
Doctors should not adjust dose only to the TSH result but yours might have because you have been complaining of heart etc. Did he refer you to a cardiologist for your heart to be examined? If not, request.
I only ever had palpitations, heart pain, constantly when on levothyroxine. Trips in ambulance etc. etc. even from work. Some people find levothyroxine difficult but some do fine.
I have had extensive heart checks and there's nothing wrong. I think your sleep will be disrupted with palps/pain.
When T3 was added to levo (I was taking a Brand levo at the time now discontinued) it immediately calmed my whole system. I am now on T3 only and am well. Not everyone feels better so it is trial and error with medications but due to the guidelines that levothyroxine alone should be prescribed.
Your ferritin, B12 and folate are all too low. The range you give for ferritin is an unusual one, I haven't seen it before.
You need to raise your ferritin to mid-range (approx 220 - 230 with the range you have given).
B12 needs to be top of the range. Even being over the range isn't a problem with B12, because your body will excrete what you don't need.
Folate needs to be in the top quarter of the range i.e. 15.7 - 19.9)
Debilitating, never-ending heart pain was one of the biggest problems I had when I was untreated or under-treated for my hypothyroidism, and also severely iron-deficient. I fixed it by raising my ferritin and taking T3 (which I had to buy myself).
To raise ferritin : Buy ferrous fumarate 210mg from a pharmacy and ask for a box of 84 tablets. This is enough for 1 tablet, 3 times a day, for 28 days. Take each tablet with 500mg - 1000mg of vitamin C. This helps your body to absorb the iron and also helps to reduce the problem of constipation caused by the iron supplements. Iron must be taken a minimum of four hours away from levo. So, if you take your levo first thing in the morning, take an iron pill at lunchtime, dinnertime and bedtime. If you take your levo at bedtime, take your iron at breakfast, lunch, and dinner.
Unfortunately you may have to shop around for the ferrous fumarate. There is a shortage of it in the UK right now, so you may have problems finding it. Don't go to Boots, because apparently they insist on a prescription. I've bought from Tesco pharmacy and Lloyds in the past.
B12 : Take methylcobalamin 5000mcg once per day. Jarrow and Solgar are popular brands and they are available on Amazon. Put the tablet under your tongue, or under your top lip, or between teeth and cheek, and allow it to dissolve as slowly as possible. Don't suck or chew. After you've finished the first bottle, you may be able to drop to 1000mcg per day to maintain your levels.
Folate and other B vitamins : Methylfolate is the best for raising folate levels. I take this included in a methylated B Complex. It is a good idea to take the full set of B vitamins rather than raise just one of them. I use this one (one a day) :
You really need to get a vitamin D test done as well. The chances are that your vitamin D is low like your other nutrients. Your doctor should do the test, but they can be done privately - ask for details if necessary. Supplementing vitamin D is easy and cheap. Make sure you get supplements of vitamin D3 not D2. The level you need to supplement depends on how low your level is.
As for T3, I'll leave it up to you to decide if you want to self-medicate. Your doctor will almost certainly refuse to prescribe it. I never even bothered asking mine, I couldn't cope with the aggro when I was severely ill. I haven't bought T3 for ages, so you'll have to ask for advice from others how to get it. Write a new question asking where to buy it, and ask for answers through PM (private message).
Iron can be absorbed at different speeds by different people. It took me nearly two years to get my ferritin up to mid-range. Other people might get their ferritin up within 3 - 6 months. The important thing to remember is that iron is poisonous in overdose, so people supplementing it must have regular testing. I would suggest a first test after 2 - 3 months of supplementing.
With luck your doctor will do it, but don't be surprised if you have to pay for your own testing.
Your experience on varying doses of Levothyroxine sounds exactly like mine. I managed 6 months on it, and was mainly bed-bound in that period.
I asked my GP to do a Private referral to an Endocrinologist, who took me seriously and told me to stop the T4. All my other hormones were thoroughly tested, and was also told I'd had an early menopause. I was 45. The Endo started me on T3 only, immediately I felt better, the way I expected to feel on levothyroxine!
With time and dose adjustment T3 I am mainly a functioning human being again!
I feel the key things were: getting referred privately, time, T3 and not accepting that because my blood results on levothyroxine were "normal" then "something else must be wrong". Good luck to you and I also agree with Shaws and Humanbean.
I will echo what rach67 says. When I was diagnosed I had a TSH of 132 and my doctor never even flinched. After getting my results into 'normal' range with a suppressed TSH, I still felt dreadful.
Just seen a private endo who is testing everything and has started me on some T3. I feel an improvement already. The heart pain and palpitations have stopped. The were awful on Levo only.
My advice is to get referred as most GPs have no idea.
It's an outside chance but I was having terrible chest pains - I was sure I was about to have a heart attack. my blood pressure was very high too. In spite of being given a heart pill to take to reduce my BP I still had the pains.
Then during my annual asthma check I was found to have a very low peak flow and given charts to fill in and instructions on how to use my inhalers for maximum effect. After a month or so following this routine I am now to my great relief no longer getting the chest pains. so, I know it is an outside chance but could you be asthmatic or if you know you are, are you using your inhalers correctly? I can't believe the difference to how I feel now that I am.
Good advice given above about getting all your vitamins and mineral levels into the higher end of the ranges. I also take CoQ10 / ubiquinol, B12 and vitamins C and D. If your doctor won't check your vitamin D there is a very good home finger price testing service offered on the TUK site - costs around £28 I think, it's really quick and efficient.
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