Really struggling. I am totally lost. Help!

Or, then again, maybe I am just too impatient. The story so far is this. I have no thyroid - removed surgically after Graves' and then later Toxic Multinodular goitre.

Many of you know my story.

For 23 years, I was taking 150mcg Levothyroxine. I was OK although not in the running for the Marathon, I always had pain with exercise, even hanging out the washing was arm-agonising. But I worked and felt reasonably well.

Then I moved. The new doctor decided that according to my 'thyroid tests' I was over-medicated and should reduce to 100. that was in November 2005. In January 2006 I had several TIAs and very high cholesterol. Given statins which almost crippled me but although my cholesterol fell my TIAs continued. I stopped the Statins, and since I was still having the TIAs the doctor put me on blood thinners, and having tried several I finally ended up on Clopidogrel (and Lansoprazole because I have a very delicate stomach) Still on 100 mcg Levo. Also was having rapid heartbeat (130-145) most days at some point. I still had a small stash of Levo so when I felt I was getting really low, I would take an extra 50 and it helped.

All my complaints fell on deaf ears, I had a thorough check to see what had caused the TIAs and why I was TATT etc. etc. etc. They all came back clear apart from a heart murmur which was caused by a valve which had been damaged when I was thyrotoxic in my youth, it was asymptomatic they said. Although my Cholesterol was now 10, I had no artery blockages.

Then I ran out of spare thyroxine, so I was limited to only 100 all the time. I could feel myself going downhill fast and was becoming desperate. At that point I found this site, and it gave me the impetus to try to get the doctor to do something for me as I was all but bedridden and agoraphobic, and had put on 2 stone. (I was already a bit overweight)

At the beginning of December I persuaded the doctor to increase my Levo and he reluctantly agreed, starting with 125. So I began taking 125 and have to say I started feeling a bit better. I lost a few pounds in weight, and in contrast to before, I was much improved. I also began to take COQ10 to support my heart.

He also sent me for a battery of tests again - persistent cough, TATT, myalgia (that's what was on the form). I went for the tests including a chest X-ray and bloods,

I went to him three and a half months later, and he was far from helpful, threatening to reduce the thyroxine again as my TSH was too low. I lost weight (5lbs), my cough was gone, I was no longer 'depressed' (I still have the agoraphobia) so I managed to persuade him to carry on with the 125, asked him about my cholesterol which had gone down to 8 from 10, and then he looked at my X-ray and told me "Your chest is clear. Your heart is bigger than it should be, but that doesn't matter. Se you in six months." So now, I not only have a valve damaged but an enlarged heart.

I did a private Blood test because they did not do the T3, and the results came out as follows:

TSH 0.07 (Range 0.27- 4.2) low

Free Thyroxine 24.6 (Range 12.0 - 22.0) high

Free T3 4.5 (Range 3.1 - 6.8) normal

With those results I felt I could afford to add a small mount of T3, so I cut the Levo to 75 and took 1/4 of a 25 mcg T3 at 6am and 3pm, I felt almost immediately less pain, more alert, more active, and I lost two pounds in weight, but then I would have a total crash and the irregular and fast heartbeat seemed to be worse. My BP was a bit higher but still in normal range. Temperature still never higher than 36. I was a little panicky and decided that perhaps I was not ready for T3 yet.

Instead, I have slowly increased my thyroxine from 125 to 137.5 (an extra 1/2 tablet of 25 mcg) starting on alternate days for 2 weeks and then every day. I am starting to sleep better, more alert still, at first I regained the two lbs I lost but they have now gone again, I have started doing more in the house, but I was still having the horrible fast/irregulare heartbeat sometime up to 4 times a day. I wondered if it could be my adrenals not strong enough, so I am now taking Nutri Adrenal as of yesterday and a Vitamin B12 spray (methycolbalmin).

I am finding I will have a good day with no heart problems, then a really bad day. Today was good until 6.00pm and than I had a heartbeat irregular and fast (about 126 to 140 at times) which lasted for 40 minutes, longer than ever previously.

This is really bothering me, so I wonder if anyone has been in my situation, I know I have to be more cautious because of my heart, but where do I go from here? My Basic Metabolic Rate is still quite low to normal - this morning it was BP 108/67. pulse 73, temp 36.4.

What I really need is some reassurance, I suppose, or some advice. I am thinking to see Dr BDP if I can, but basically my own doctor only wants to reduce my thyroxine every time he sees me. I know if I let him do that, he will eventually kill me.

10 Replies

  • I am so sorry you have become so ill through the pig-headedness of a GP who believes he knows more than you with regard to your clinical symptoms and additional problems. It is a scandal really.

    I suggest your buy your GP a little present and present it to him with the necessary items highlighted. I haven't read the booklet but I have read an article by Dr Toft and hope it contains a similar content. Someone will say if the two items are similar and you only need to get the booklet. If not you can email and ask for the Pulse online article by Dr. Toft and question 6 will be the one you want.

    It would seem your GP doesn't know that low thyroid does cause heart problems because of undiagnosed/undertreated as well as other additional symptoms.

    This is a link re adjusting doses and cursor to question January 25, 2002- two excerpts

    1. Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

    2. When the typical patient’s T4 dose becomes just high enough to produce enough T3 in the pituitary to suppresses the TSH, T3 production in other tissues will be inadequate to keep their metabolism normal. As a result, the person's tissue metabolism will be slow, and she'll suffer from symptoms of too little thyroid hormone regulation. The net effect of all this is that the TSH is effectively suppressed by a T4 dose that is inadequate for keeping the metabolism of other tissues normal.[1,p.990]

    I suspect, then, that the problem in your case is that you're being treated with T4—the poorest choice of thyroid hormone preparations. I can understand why most mainstream doctors don't understand this matter. It’s complex, and, because of that, they tend to simply accept the opinions of conventional endocrinologists. What utterly baffles me is why conventional endocrinologists don't understand it.

  • I feel your are right, but I suppose I shall have to see Dr BDP to see if he can give me some advice. I am certain that once I get the dosage right (Of T3 or a combination), I will start to recover.

    Obviously always in the back of my mind is the fear that my heart will not take it all. I will try not to panic, be a little more patient, and keep persevering.

    Do you happen to know what might be the normal ratio of T4 to T3 would be? Mine seems to be just under 6:1, unless my maths is out, (never a strong point of mine!) so does this suggest there could be a conversion problem? I don't know really if that might be the case. It is such a minefield!

  • On Levo I had numerous ECG's/trips in ambulance/five day heart monitor, palpitations on an off all day/worse during night.

    As soon as I stopped T4 and switching meds- I haven't had any of the above.

  • So, actually, it may not be my heart which is at fault, but as you say, simply the result of taking Levo on its own. What are you taking now, may I ask? Also, who is monitoring you? Are you going private or do you have a pet GP? Sorry to appear prying but everything that can give me some reassurance is a godsend at the moment.

    Thank you so much for being there.

  • I am not medically qualified - it is just my own experience of taking levothyroxine.

    I did go private but now I am stable I will only have another appointment if I feel I need it or if my blood tests warrants it. I am not worried about blood tests now and will only have a yearly one by GP and look at it myself.

    Before the thyroid gland blood tests people were treated until their symptoms went they never had a TSH etc.

  • I can only speak from my own experience. My heart has been a problem for many years - to the extent that when I'm bad doctors listen to it, pull a horrified face and ask if I have a hole in my heart. I don't.

    Then when I'm feeling better it sounds ok. Last year it was racing out of control all year, quote from a GP at my practice "you've got tachycardia".

    I went on thyroxine last November and my heart immediately stopped racing so much and my atrial fibrillation, which was constant, stopped almost completely.

    In addition to thyroxine, I also take nutri-thyroid - suggested by Dr P. Have you thought of trying that top up your thyroxine if your GP refuses to prescribe what you need? I think it's similar to NDT but maybe not so strong.

    On the bottle it says take one a day, but Dr P told me to take as many as I need. I can't get above 2 as it makes my thyroid ache, but I have reduced my thyroxine.

  • I'm not sure if Nutri-thyroid would be useful, because a have had a Total Thyroidectomy. I think that is the case, anyway. Of course, I could be totally wrong.

    I'm trying Nutri-adrenal, but last night I had the most horrifying tachycardia which lasted for 40 minutes. My pulse got up to nearly 180. I KNOW I am under-treated but it's where to go from here.

    I am being comforted by the fact that you and others have conquered this, it shows there is a light at the end of the tunnel.

  • Oh dear, that sounds like where I started 37 years ago. My heart was doing 180 a minute when I was awake and 120 when I was asleep. They filled me full of beta blockers to stop it. Won't bore you with the rest of the story.

    Don't know for certain about the NT, but Dr P thinks they are similar to NDT. Their bottle says they don't contain hormones, but they are a glandular product so might give your body some of the stuff it needs as you don't have a thyroid. Maybe someone more knowledgeable than me could tell you more.

    At the very least I would think they are unlikely to harm you.

  • Do you think there could be some other problem? Sounds like you are on plenty thyroxine and having symptoms of too much. Perhaps something that is preventing your body utilising it properly? Sometimes I think that the effects of the immune system are overlooked. Perhaps the symptoms you are having are the result of a defective immune system. Cytokines for example can have massive effects on the body and the way we feel.

  • Not sure about too much, when I was on 150 I was not overmedicated, as I have no thyroid at all. In fact I had two jobs up to the age of 60. I had a medical at 60 because I was planning to continue working for another 5 years, and I got a glowing report! Cholesterol 4.7, healthy cardiovascular system (despite heart valve damage as a teenager due to Graves') - in fact they said I was the healthiest 60-year-old they had seen for a long while.

    I only changed doctors because my son got married and moved 130 miles away, so he used the money from his house in the South to buy us a house here in Lincolnshire, to be nearer to him and his family. That was when I changed doctor and my thyroxine was reduced. And that was when my problems began. I had not had heart problems or anything prior to that. But no sooner was my thyroxine reduced to 100 than I started having all the symptoms I have mentioned, including cholesterol of 9.7 rising to 10, pain all the time, weight gain, depression, palpitations and irregular heartbeat, TIAs, you name it..

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