seeking someone who will understand my thyroid problem and suggest some help

[lisabax]

Sorry if this turns out to be a long post! Like many others I 'm so grateful for this site and all the helpful information that is posted. I am hoping someone can help with this...

I have been hypo (almost certainly hashi's as it's in the family) for about 12 years, on T4 175mcg until 4 years ago, when endo put me on T3 (20mcg) as well as 75mcg T4 because of brain fog, lack of energy and depression. All those symptoms went and I felt fine for a couple of years. Trouble started last year when had ovary removed. Came out of hospital with tinnitus, and as last year went on, found that I was more breathless with lots of aching joints and muscles.

Went to see Dr P, who told me I had adrenal problems and possibly T4 conversion problem. He suggested nutri adrenal and to reduce T4 and increase T3. I did this over the Christmas hols, and found that one night I was having palpitations, and irregular heartbeat and heart fluttering. This frightened me. I was on heart monitor for a week, and told I had Atrial Fibrillation and ectopic heart beats. Suggested I take beta blockers. However, this is sometimes given for hyperthyroid and I didn't want to counteract the thyroid medication I was on, so I declined. In spite of returning to previous doses of T4 and T3, the heart problems remain.

symptoms got worse. By April this year I was having pain in both feet, which has been attributed to plantar fasciitis. I know this can be related to thyroid disease. I am also getting tremors in my hands and feet at times, and a pain like an electric charge all the way down my spine to my feet and out to my hands mostly at night.

I asked to see NHS endo originally prescribed T3. He is very accessible and willing to listen. However, he is main stream and his understanding is limited. His feeling is that if my symptoms are attributable to thyroid, then I am over medicated, but he is not sure they are thyroid related. My heart rate is normal and my temperature lower than normal. I can't lose weight and suffer from a variety of hypo symptoms as listed on your website. So I seem to be displaying symptoms of hypo and perhaps hyper as well.

My latest test results were: TSH 0.02, FT4 15.2 (11-25) and FT3 5.7 (3.?-6.8). Endo thinks TSH is what suggests hyper. He has not done rT3, which may be enlightening. But he does say that if I can find a health professional who can help with dosage of Armour he would be willing to support me.

last year my B12 and D3 levels were just fine, so I don't think it is that. So, if I am to follow my endo's advice, I should look for someone who can prescribe and monitor progress on NDT and probably to check rT3 as well. I have read on the Thyroid UK site about a Dr C. Can anyone pm me to say whether he could help?

Any suggestions welcome. Symptoms confusing and rather scary. Thank you. LB

[shaws]

I had similar heart symptoms to you when on levothyroxine, although it wasn't AF. I had so many ECG's and five-day heart monitor and heart is fine. It is a horrible experience. I was given beta-blockers.

When I gradually stopped levo and increased T3 the palps and stopped and I was on T3 alone.

My TSH is 0.01 and I am not hyper. Sometimes when we still complain when bloods look o.k. they guess.

Although you say your B12 and Vit D are 'fine' can you get the actual numbers and range as they may be within range but still at the lower end rather than the upper.

email [e-mail] who has a list of NHS Endos/private doctors.

[lisabax in reply to shaws]

Hi Shaws, thanks for your reply. Maybe I didn't give myself long enough to reduce T4 and increase T3, but the heart problems started when I increased the T3 and I put it down to that, but may be wrong. It is all so confusing, and I feel I needed more guidance. My B12 last year was 7.12ng/L (180-2000) so it is well above the lower end of the range. D3 however I notice wasn't measured because I have a normal bone profile. Hadn't noticed that before. I do supplement D3 and magnesium. I do have Louise's list, but wondered if there was anyone out there with similar problems who has been helped by anyone in particular. However, I will go through the list and make some phone calls. Thanks very much for your help. LB

[shaws in reply to lisabax]

It is trial and error I am afraid. What suits one doesn't suit another.

I had more symptoms whilst on levo and I said to my GP levo is making me more ill and he said 'to prove that you would have to stop it'. Of course I couldn't do that and when the endo added some T3 I thought I would stop levo for a week as I was only on 10mcg T3 and I began to feel so much better that I didn't take levo for another 6 weeks as I knew my bloods couldn't be out. I had no palps. Took levo again and when next saw Endo and they saw how well I was I asked to be referred back to GP, went private and took T3 alone. Now on NDT.

I hope you find a solution.

[marram]

Hi Lisabax

Are you still taking T4? Maybe you need to get rid of the T4 altogether and go to T3 only rather than any combination.

If you are not converting then no amount of T4 is going to be any use to you, even Armour. Have you seen 'Recovering with T3' by Paul Robinson? He only became well when his system was completely free of T4.

You say you saw Dr P. Did you continue with follow-ups? Perhaps it would be worth giving him a call and letting him know how you are, because I am sure he would be very willing to support you in getting rid of the T4.

I have had similar symptoms, he has been very good and is letting me take things very, very slowly because I tried Nutri Adrenal before and had problems, so he has said to start again with only half a tablet and give myself plenty of time to settle before even considering increasing. I am reducing my T4 and adding T3, I have found following his suggestions that my ectopic heartbeats and tachycardia are improving. My own GP told me I would have a heart attack if I changed to a different regime than Levo, but I am slowly finding a difference.

He may well look at the possibility of natural progesterone as well.

I would think that he could help you but it may take some time.

Marie XX

[lisabax in reply to marram]

Hi Marram, thanks for your response. I am still taking T4, and have gone back to my original dose of 75mcg a day. In fact over the last few weeks I've increased to 87.5 to see if there is any difference, and I have been sleeping better and am less anxious and irritable, but no change in the level of pain. I have Paul Robinson's book, and maybe I tried too quickly to increase T3 after reducing T4, but I was really spooked by the heart problems.

I know that Dr P is a really nice and very genuine, but I did feel he was a bit vague with his advice and I think I would like clearer guidance. I don't trust my limited brain function!

It's interesting that your heart irregularities are improving by reducing T4 and adding T3. It may be that I just tried to increase too quickly, but I'm a bit scared to try it again. It's awful that your GP tried to scare you in that way. Poor you, and well done for go ahead. I wish you all the best, and hope that you will post updates. Thanks, LB

[tegz in reply to lisabax]

T3 is strong stuff- a 5 microgram dose is available which is presumbaly therapeutic-

so getting toward 20x that is capable of causing sudden reactions.

Reading between the lines on here and elsewhere it does seem that fear of dealing with T3 and its unpredictable results leads to enslavement to the TSH/T4 safe [but often enough- useless] route.

If you do have conversion problems- after the RT3 has cleared, there could well be a surge [from my somewhat limited knowledge]. I think RT3 is produced from T4, though.

Interesting that you thought Dr P a bit vague- but there are many unknowns in the equation and caring with caution is better than mindless dogma- as we know so well here.

[lisabax in reply to tegz]

Thanks tegz

[tegz]

You may find this article helpful- esp. the last bit about Iron & Copper [in HypoT] easing heart instability.

I found Iron [via Spatone] helpful, taken away from Levo. Be careful with copper though- it can be toxic in large amounts and affects Zinc, too.

tpauk.com/articles/2726-low...

[lisabax in reply to tegz]

thank you tegz. I looked at the article and certainly copper toxicity rang bells. But apparently it is not just a straightforward case of supplementing, because it can be due to biounavailablity (!?) However, I do think this is a good thing to be researching, so thanks for that. LB

[tegz in reply to lisabax]

You're unlikely to get too much copper if not supplementing.The interesting thing was the sequence being important - that of taking/not taking iron and copper with Zinc depending whether Hyper or Hypo!

Room for a lot of research there- but it will only get done by peoples' trial and error -as no money in nutrition as cures, compared to expensive [& new] drugs.

[tegz]

PS :this is a repeat post-edit to delete

[Hidden]

I know I sound like a stuck record but all your symptoms are classic B12 deficiency:

pernicious-anaemia-society....

The electrical feeling is called L'Hermitte's Sign.

You said this all started after surgery? Well if you had a nitrous oxide based anaesthetic this would have inactivated all the B12 in your body. Google "nitrous oxide & B12".

So your levels might look good on paper but you can't do anything with it. IMO you should try and have the active B12 test:

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

Hampster x

[lisabax in reply to Hidden]

Thank you so much Hampster. I looked at the list of symptoms and they rang so many bells! I will look into getting the active B12 test. LBx

[Heloise]

I agree with the others that T4 may be your problem. Even if you would stop all the T4, it would remain in your system for two or three weeks so I guess it would take that long for you to make a decision.

I recently went directly from one grain Armour to 25 mcg. T3 and have had no heart issues at all.

web.archive.org/web/2010122...

Dr. Lowe was a T3 ONLY advocate and used it himself.

[lisabax in reply to Heloise]

I think you're right Heloise. I have an appointment with my endo in August, and I'm going to suggest going on T3 only for a while, to clear any rT3 that may be lurking (I've ordered a test kit from Genova to find out), and will see how that goes. I hope he will be willing to support this. Thanks LB

[Heloise in reply to lisabax]

I hope you can get them to cooperate. Do you know about the ratio? stopthethyroidmadness.com/r...

The only problem is that you should have both T3's done at the same time for it to work. You could also have "pooling" of T3. I looked up the prices for Genova Europe a few months ago and to have ALL the thyroid testing was more reasonable than picking out one or two if that's any help.

[lisabax in reply to Heloise]

thanks very much Heloise, that's what I'll do. Cheers LB