I am a 54 yr old female in menopause and have a heart issue, hypertrophic cardiomyopathy. 5 yrs. ago I had a full body scan for my own pece of mind. It showed 3 thyroid nodules. I had an ultrasound, they tried a needle biopsy, but said it was too small to get an tissue, so lets just watch it. Last year I had an ultrasound and 1 was 1.4 cm. This year I did another full body scan and then an ultrasound, and 1 nodule was 2.0 cm. For the last year I've had a dry cough and become hoarse often, and this year add trouble swallowing food without many swallows, and choking even on spit on occasion, and 3 months ago began having what the internet says is Atrial Fibrillation. I've contacted my cardiologist and he says my heart is fine, and take some magnesium, which I already do...I am seeing my doctor Monday to go over the results of the most recent ultrasound. So far he's diagnosed me with asthma, which I've told him I do not have. And then silent acid reflux which several barium swallow tests say I do not have. And now he's sending me to a sleep clinic for the lack of sleep I'm having, thinking it's sleep apnea, which I don't snore and I'm not overweight, so I'd be surprised if I have it, and he's sending me to a pulminolgist because I'm having trouble breathing.
I see a hormone doctor and take natural estrogen and progesterone creams. And haven't felt better, I really thought all the above symptoms were a problem with my hormones. My hormone doctor did say my thyroid levels were off, but thyroid meds seemed to make my heart palpitation worse so I stopped them. But will start back on Vitamin D to protect my heart and iodine since I was low last time I was tested.
I'm wondering how many of you with thyroid issues and/or nodules have had them removed and felt any better. And if you didn't have surgery what turned out to be the problem? I want to take ammunition to my doctor, I'm tired of hearing "oh those issues can't be due to your thyroid" well if it's not then what is? This has gotten worse over the last year and I want a solution.
Thank you!
Sherry54
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Sherry54
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Do you have a print-out of your thyroid results? You need TSH, FT4, FT3 (insist on this), Thyroid Antibodies (as you have nodules), iron, folate, ferritin, Vit b12 and Vit D.
Your doctors are doing the classic thing, fishing in the dark and saying "the first stupid thing that comes into their heads". I put that in quotes because I said to my GP a few years ago that "it isn't helpful when a doctors says the first stupid thing that comes into their head".
If you have a nodule, then difficulty swallowing and hoarse voice are very likely to be connected. Sleep apnoea is a possibility, as it is often caused by thyroid problems.
Trouble breathing I identify with, I had that when I was really bad.
Heart palps and atrial fibrillation I had relentlessly for 37 years. I've had so many echocardiograms I probably kept the machine makers in business. They never showed anything but they keep panicking GPs happy.
Treating my adrenals and thyroid have magically sorted out my heart.
You need to get all the tests done first, so you can work out where to start with your treatment. Make sure to get a print-out of all the results and make sure to insist on the FT3 test.
Yes, I get all my blood work results, I keep a notebook with them and did a spreadsheet so I can see historically the results. I'm very organized. I'm also very honest and have told my doctor many times, he's not helping me, and I will not take meds for things he thinks I have that I know I don't. I can tell it makes him angry that I won't just bend like everyone else and follow along, but I research research research!
TSH- 2.01 mIU (6/9/14) but was 4.48 mIU (1/27/14) (no range given)
FT4- 2.7 ng (6/9/14) but histroically has been 1.1 ng (range: 1.4-3.8)
FT3- 2.9 pg (6/9/14) (range: 2.3-4.2)
Total T3 was 81 ng in June but 128 ng in November. (range: 76-181)
Thyroid Antibodies- < 10 IU on every test last one 10/21/13 must get a current test (range <35)
Iron- I don't know they always do a ferritin only test
Ferritin- 77 ng (6/9/14) (range: 10-232)
Folate- 20.2 ng (11/12/13) (range: >5.4)
Vit B12- 684 pg (1/27/14) (but stopped taking it too high my doctor said, but have now restarted it a week ago) (range: 200-1100)
Vit D- 41 ng (6/9/14) but was at 60 ng in January due to a supplement, I've since stopped since the doctor said it was too high. But now have restarted it today. (range: 30-100)
Cortisol- not saliva tested- 13.1 mcg (4.0-22.0 in the a.m. when I did it)
You're absolutely right, my doctor doesn't give consideration to what I'm telling him, and despite blood work all being "normal" plunge in and send me to an endocrinologist for my thyroid just to be sure it's not what's causing all these issues.
I had no idea sleep apnea could come on as a result of thyroid issues! Makes sense since I haven't slept well since entering menopause, but lately it's been worse, I mean I wake promptly at 2 a.m. and cannot go back to sleep. So perhaps I do have apnea!
Thank you I feel relief that you also had the breathing problem. It's been so frustrating to hear over and over, "asthma" and I tell him I do NOT have asthma, SOMEthing is WRONG!
Well, we'll see where he wants to go with the results of my thyroid ultrasound he just got the results of. And according to him all my blood work is "normal".
Sherry, do you have the lab ref ranges for your (the figures in brackets after your results)? It's not possible to interpret some of your levels without the ranges.
Ferritin, B12 and folate are good. You probably don't need to supplement B12 but some like it high in range and excess is excreted so you won't OD.
Vitamin D is low. Optimal is 75-200 and high in range is best. Supplement 5,000iu softgel caps for a couple of months to build up your store and you can then supplement 5,000iu on alternate days.
I've edited my post to "rosetrees" to include the ranges from the lab I go to. Starting back on Vitamin D today, read low range can give you heart issues.
Sherry - we need the lab ranges for FT3 and FT4. Especially as you are in the US and they likely will be using different machinery and/or different units of measurement.
Waking at 2am and not getting back to sleep is a possible indication of adrenal issues. Do order the saliva cortisol test.
Your FT4 and FT3 are low and might feel better if they raised. It's hard if you are sensitive to thyroid meds. What did you take? If your hormone doc is willing, it might be worth trying either NDT (natural dessicated thyroid) or something like thyrogold or Nutri Thyroid. The last two are bovine products rather than porcine and are much weaker and easier to tolerate if you are sensitive. You could start really low (1/4 tablet if necessary) and work up.
Progesterone and oestrogen did nothing to help me. Treating my adrenals was the key and is very possibly responsible for your heart symptoms and also your intolerance to thyroid meds. It is generally said that you should start treating your adrenals before treating thyroid.
I took Synthroid which I tried off and on over the years, and it gave me chest pressure and I'd just feel terrible. Then Armour Thyroid, but that gave me palpitations. So now nothing. But I had read previous web pages about NDT and will sugges it when I see my hormone doctor in October.
Estrogen and progesterone, I've told my husband, the only thing it cured is my labido, but not one other complaint I've had has been cured. And I've been on the natural hormone creams for a year. So now I'm 100% positive my issues aren't estrogen/progesterone/testosterone related and instead adrenals and thyroid related. Now if I can get them to listen!!! My hormone doctor said more estrogen and you'll sleep like a baby, NOT!
I have no idea how you treat your adrenals. I did see a naturopath for a while and she had me on Adrenacort which seemed to take away my freezing cold no matter what issue away, but with licorice in it it eventually bothered my heart.
Liquorice can raise blood pressure, which might not be good. As a young woman I had the classic AF symptoms of low blood pressure and dizziness/seeing stars if I stood up too quickly. As a more mature, post menopausal lady I have high blood pressure so have to be careful.
Treatment for adrenal issues depends on whether you have low cortisol (I do), high cortisol or a mixture, which is why the saliva test is so important.
If your naturopath only understands sex hormones, and can't see that even they aren't helping, then I would strongly suggest it's time to find someone who understand adrenal and thyroid issues. Maybe phone around and ask some of them what conditions they treat and how.
I take a blood pressure medication for my heart conditon, so for years my bp's been 85/60, very low, and now all of a sudden it's getting to 110-115/65-80 which I know is still nomal, but high for me. And I get dizzy too, have for a while, been living with it due to the low blood pressure. But now I cannot explain, seems I'm worse with the higher bp.
I stopped seeing the naturopath, she can't prescribe, and I wanted to see a hormone doctor. I couldn't afford both since my insurance doesn't cover either. I was 100% sure some estrogen/progesterone/testosterone would fix me right up! But it hasn't I've only gotten worse. I see my hormone doctor in October and she's open to thyroid meds, she's told me my thyroids off, I haven't seen her since it's gotten worse.
Sherry, Armour Thyroid is NDT. There are others of course but Naturethroid is hypoallergenic and I found it suited me. Everyone is different. I tried about 4 NDTs before Naturethroid.
Sherry, your TSH isn't bad but your FT4 and FT3 are a little low. VitD aids conversion of T3 so your levels may improve as you supplement vitD. If not, a little T3 may be beneficial. You might want to run that by your cardiologist as they're often in favour of a little T3 to support the heart.
I think the priority must be to get the nodule biopsied.
Rosetrees' suggestions are good and make sure you have the ranges on the blood test form as labs differ and it makes it easier to comment.
How many people have been told their symptoms are 'nothing to do with thyroid'. If doctors only go by the TSH and not the symptoms of their patients, it is wrong as the TSH varies throughout the day and sometimes it doesn't rise very much either.
We are entitled to copies of our blood tests which we should keep for our own records anyway plus you post here if you have queries.
It's time to step off the merry-go-round.
Swallowing issues are quite normal with a thyroid gland problem and it's not pleasant, even if we haven't nodules.
You're absolutely right. My husband got very ill over a year ago, suddenly couldn't remember how to do his job. It's a long story but I began keeping all of his blood work and test results in a notebook, and so thought, why not my own too!
I just felt like perhaps these were all separate health issues and not related to my thyroid since my doctor keeps telling me my thyroid blood work is "normal".
Very frustrating, praying for proper care before I have a heart attack or something!
This is the recommendation of Dr Toft of the BTA. It's part of an article in Pulse Online and if you require a copy, email louise.warvill@thyroiduk.org. You can also borrow some books and I would recommend Diana Holmes' Tears Behind Closed Doors.
6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?
The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).
Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.
THank you for your detailed response. I did look at the book I can order it on amazon.com. I cannot believe what she went through! I feel her desperation and exhaustion at beng diagnosed with so many other illnesses I know I don't have, and have refused medications on those diagnosis. I know better. But I want someone to listen and treat my thyroid.
Sherry, Your GP should refer you for a fine needle aspiration biopsy, especially if it is a single nodule as there is a small chance of thyroid cancer. 2cm is plenty big enough for a FNA. My nodule 2.8cm compressed my windpipe making breathing and swallowing difficult, particularly when I lay down. I could breath freely when the nodule and left thyroid lobe were removed.
Levothyroxine monotherapy caused me dreadful palpitations and a host of other debilitating symptoms but the addition of Liothyronine (T3) calmed the side effects and the T4+T3 combination therapy suits me. Long term undiagnosed and untreated hypothyroidism can be bad for the heart so you need to find a treatment that you can tolerate.
I did get a fine needle biopsy (what a horrible thing!) and it was inconclusive, but that was in 2010 and I didn't have any of these problems I'm having now.
I couldn't view the link you sent it says it's only available in the UK and I'm in the US.
Yes, I took Synthroid (Levothyroxine) and it was terrible for my heart, I also took Armour Thyroid, natural or not, it still caused problems. But have not tried a T4+T3 combo!
I am going to guess, since I've had my doctor for 10 yrs. that he'll refer me to the surgeon for a FNA, and we'll go from there. First, I don't want to have surgery, but am more worried they'll tell me it's not cancer so therefore don't believe any of my symptoms are related to my thyroid. But I believe it is indeed pressing on my esophagus and causing the breathing/choking problems.
Sherry, my FNA was inconclusive but compressing my windpipe meant the nodule had to be removed. Histopathology showed Hurthle cell carcinoma but the cancer wasn't causing my symptoms, it was the Hashimoto's which made me hyper and hypo. TSH was 2.30 so despite a diagnosis of thyroiditis I wasn't given medication until after completion thyroidectomy 3 months later.
Your thyroid antibody test is negative which usually rules out Hashimoto's. It may be worth testing thyroglobulin antibodies which are sometimes positive when thyroid peroxidase is negative. Autoimmune disease is the usual reason for fluctuating thyroid results but vitamin deficiency, surgery and illness are other reasons.
I wasn't having the breathing and choking problems I'm having now when they did the FNA in 2010. But now that I am I hope they'll remove it cancer or not. And pray this will solve all my troubles since estrogen/progesterone, blaming menopause for all these symptoms, has not solved a thing!
I will discuss the thyroglobulin antibodies test with my doctor on Monday. Thanks!
The doctor refered me to the surgeon, he said no needle biopsy, just remove it. I called the surgeon and have an appt in 2 weeks. And then if he says surgery then I'll have to wait for my insurance to approve it. That could take 2-3 weeks, then I have to wait for the hospital to have an appt....it's a process. The doctor agrees my choking, coughing, swallowing problems are probably due to the nodule, but doesn't think my heart troubles and sudden high blood pressure or being hot all the time have anything to do with this. But as I said to my husband, doctors don't know everything, and if you have a nodule pressing on your windpipe it could be pressing n my thyroid causing it problems.
I'll let you know how it goes in 2 weeks. Hopefully I can get through, the breathing and heart problems are really debilitating.
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