Hi, my daughter has been suffering from an intermittent hoarse voice and sore throat since she became ill about 3 months ago. She's currently on 39.28 mcg of Levo (by varying her daily dosage) and her endo isn't keen to increase this dose as she's concerned that any increase in dosage will lead to a suppressed TSH which could be dangerous. Her latest results were FT4 16.4 (12-22), FT3 3.6 (3.1-6.8) and TSH 0.77.
We've asked her endo whether her hoarse voice (which is sometimes so severe she struggles to speak) and her sore throat are connected to her hypothyroidism, however the endo says they're not as a hoarse voice is a only symptom of "severe" hypothyroidism which my daughter doesn't have! We would be really interested to know whether anyone else has experienced either of these symptoms whilst not being severely hypothyroid. Thank you!
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she might have Coeliac disease, and this is something we still need to look into, although it's complicated by the fact that she eats very minimal gluten as bread doesn't really agree with her. In addition to this, she has an IGA deficiency which makes testing for Coeliac disease slightly more complicated and this is something we need to raise with her gastro.
So you’re possibly waiting for coeliac blood test
Wether she test positive or not likely to benefit from being absolutely strictly gluten free
Also she’s due to have iron infusion shortly
Important to get all four vitamins tested and OPTIMAL
Thank you SlowDragon. My daughter's hypothyroid symptoms seem pretty severe to us (contrary to what her endo says), so it's hugely helpful that other people are able to corroborate this. She did the Blue Horizon DNA Thyroid Genetics test several weeks ago and we're just waiting to get this back - it will be interesting to find out what it shows.
Well …..when I was on approx 87.5mcg approx 25 years ago……TSH was around 1, but Ft3 was just below bottom of range…..and I was bedbound/in wheelchair …..
I now know, having got access to historic test results in 2016, that vitamins were terrible, vitamin D was 12nmol.
(I was never told or prescribed any vitamin D)
We always recommend getting Dio2 test via Regenerus
Thank you SlowDragon, I didn't realise that Regenerus was the recommended lab. We'll bear this in mind if depending on the results from the Blue Horizon test.
It's shocking that your vitamin results weren't flagged up - my daughter has had similar with both her Ferritin and Vitamin D and I will never make the mistake again of accepting "normal" results without seeing copies of the actual results.
I think this endo is rather ignorant about hypothyroidism and it's treatment. In fact most of them are because they're usually diabetes specialists not thyroid specialists, thyroid specialists are a bit like hens' teeth.
she's concerned that any increase in dosage will lead to a suppressed TSH which could be dangerous.
In what way did the endo say a suppressed TSH is dangerous? Ask for this information and whatever you are told will happen ask for the evidence.
I have been on Levo for about 47 years, I have been keeping a record of my results since 1995. I have results for 79 thyroid function tests. Suppressed TSH is a level below 0.1 and out of 79 tests my TSH has been above that level 6 times, so 73 times it's come back as suppressed. I'm not dead yet, I don't have osteoporosis nor do I have atrial fibrilation (two things doctors will tell you that happens when TSH is suppressed).
TSH is not a thyroid hormone, it gives no indication of thyroid status.
FT4 and FT3 are the thyroid hormones that tell us what we need to know and we are only overmedicated if FT3 is over range.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"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).*"
*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
ThyroidUK has an article on the myths of hypothyroidism here, scroll down to The myth that a suppressed TSH leads to Osteoporosis which cites studies about this:
Our member Diogenes is Dr John Midgely, scientist, thyroid researcher and advisor to ThyroidUK. He has made many posts about this, here are some referring to them:
There may be even more but it's all evidence you can bounce back to the endo if she starts on about suppressed TSH causing osteoporosis and AF.
We've asked her endo whether her hoarse voice (which is sometimes so severe she struggles to speak) and her sore throat are connected to her hypothyroidism, however the endo says they're not as a hoarse voice is a only symptom of "severe" hypothyroidism which my daughter doesn't have!
More tommy rot and ignorance!
Hoarse voice is one symptom of undermedication that I get, not "severe hypothyroidism" just undermedication. Happens most when I'm in full "I could natter all day" mode when I see a friend rather than just the occasional remark (I live alone) and only if I am undermedicated (which I don't allow to happen any more because I've taken full control!).
Thank you SeasideSusie for such an informative and helpful post, it's much appreciated. We will definitely watch Dr Toft's video before we go back and see the endo again.
It's very reassuring to hear that you get a hoarse voice when undermedicated - obviously our endo was never going to tell my daughter than this might be the reason for her croaky voice! I think we may be looking for a new endo fairly soon....
Asking because my voice has completely changed after my thyroidectomy, for the better - back to normal. That is all everyone talked about after surgery.
Hi Litatmon, thanks for your reply. She certainly doesn't have any visible or palpable nodules, however she's never had her thyroid scanned (we think she has secondary hypothyroidism)so I guess this can't be completely ruled out. Something else to think about!
If she has secondary hypothyroidism even Synthroid's own pamphlet talks about not dosing based on TSH, for other forms of hypothyroidism.
I don't want to quote the manufacturer's own wording incorrectly, but heck if the people who make the pills are guiding away from doing that! - sigh for us all to not get exhausted with these appointments.
This is really helpful information, thank you so much for digging out the link. It sounded as though my daughter should have been started on 75mcg rather than 25mcg. Hmmm.
If the voice issues continue to persist after optimising meds and nutrients etc, it would be worth considering the possibility of silent reflux, also known as laryngopharyngeal reflux (LPR). Reflux is very common with thyroid disease. It is called silent reflux because people often don’t realise they have it.🙂
Cookerybookaddict86 I would second what limonene7 has said - many people with LPR have autoimmune hypothyroidism. It can be triggered by your stomach having either too much or not enough stomach acid (the second of which many hypothyroidism people suffer with). I found out I had LPR after my voice kept going and I had random sore throats with no fever or other symptoms. It’s worth a check. It’s diagnosed with a camera down the nose, which the GP should give a referral for if your daughter has persistent unexplained sore throat or voice problems.
Thank you Sparklyjenson and limonene7 for your helpful replies. She does get a lot of random sore throats which we've always thought were caused by a weak immune system, however she also a lot of digestive issues mainly related to very slow motility so this sounds quite plausible; it's definitely something I'm going to mention to her gastro.
A review paper covering thyroid (and other) effects on voice.
Some time ago, I saw something which suggested that suggested detailed voice analysis could be used to identify hypothyroidism. (There were privacy issues as it seemed possible to apply the technique to a phone call. Thus making it something someone could do without the patient's informed consent (or, indeed, any consent.)
Endocr Connect . 2022 Mar 15;11(3):e210505.
doi: 10.1530/EC-21-0505.
Voice changes in reproductive disorders, thyroid disorders and diabetes: a review
Ewa Stogowska 1 , Karol Adam Kamiński 2 , Bartosz Ziółko 3 , Irina Kowalska 1
Affiliations
• PMID: 35148272
• PMCID: PMC8942322
• DOI: 10.1530/EC-21-0505
Free PMC article
Abstract
The subject of vocal changes accompanying pathological conditions, although still not well explored, seems to be promising. The discovery of laryngeal receptors for sex hormones and thyroid hormones can strongly support the hypothesis of changes in voice due to various endocrinopathies. On the other hand, the impairment of the proper function of the vocal apparatus can also be caused in the process of the microvasculature complications of diabetes mellitus. This review was a comprehensive summary of the accessible literature concerning the influence of selected endocrinopathies on subjective and objective voice parameters. We analysed a total number of 16 English-language research papers from the PubMed database, released between 2008 and 2021, describing vocal changes in reproductive disorders such as polycystic ovary syndrome and congenital adrenal hyperplasia, thyroid disorders in shape of hypo- or hyperthyroidism and type 2 diabetes mellitus. The vast majority of the analysed articles proved some changes in voice in all mentioned conditions, although the detailed affected vocal parameters frequently differed between research. We assume that the main cause of the observed conflicting results might stem from non-homogeneous methodology designs of the analysed studies.
Hi Helvella, many thanks for these links - this is really interesting research. I'm very tempted to wave it in front of our endo who claimed that the change in my daughter's voice could not possibly be related to her hypothyroidism!
I’m sorry your daughter is experiencing all these symptoms. I was also about to suggest silent reflux as my own experience is leading me to the same conclusion. I have Hashis, live alone and teach in HE - my voice fatigues within an hour of continuous talking or being in a cafe/anywhere with background noise. It hurts to speak for the rest of the day and takes a couple of days for the huskiness to go. Suspect I’m still under medicated at 50mg and TSH of 2.17 but there is no convincing my GP of the intermittent severity of my hoarseness or need for a dose increase. A chest X-ray seems to be first line of enquiry for hoarseness before you can be referred to ENT. My referral has stalled at this point so you may need to insist.
I’ve decided on the balance of probability that it’s most likely LPR so planning to try Betaine HCL. In the meantime I find drinking meadowsweet tea brings some relief to throat and occasional burning feeling.
Hi Realtiger, many thanks for your reply. The silent reflex isn't something we had considered, however we're definitely going to mention it my daughter's gastro as she has a number of other digestive issues so its quite plausible she has this as well! Thank you for the recommendation for meadowsweet tea, this is definitely something we're going to try.
My story may frighten you - but I outlining my experience. I now speak perfectly well - though I have to treat my vocal chords with respect.
I recommend you see an ENT Consultant who specialises in the larynx and neck. This speciality is essential. To tell you my experience:I had a those symptoms for a few months and it became more and more difficult to speak. Finally an ENT Consultant advised me that I had a growth on my larynx. Because diagnosis was so delayed worse news followed - it had become cancerous.
I remembered someone whose surgeon had 'accidently' severed a nerve when doing the procedure - that person has been left with just a whisper for the rest of his life.
I saw one ENT Consultant who was guessing (yes, in front of me) how to remove the growth. I did my research and identified an ENT Consultant who treated opera singers and barristers etc. He has been superb ever since (only Private now).
During radiotherapy I lost my voice totally and this occurred on occasion for a while. I learned what it was like to live with a non-visible disability. Though at times I could whisper, this was forbidden as it caused damage to the vocal chords.
I came through this terrifying experience safely. Exactly 10 years ago I was having the 6 weeks of daily radiotherapy starting from 2nd June. Today no one would guess there had been a problem with my vocal chords most of the time.
I doubt an endocrinologist has sufficient knowledge of the vocal chords - I think only a specialist ENT Consultant who understands and treats the vocal chords and the neck has sufficient skill and knowledge. I saw mine privately then had the radiotherapy through the NHS.
Of course, this may not be the cause of your daughter's vocal problems but I felt I should let you know my story.
Hi Fifteen, thank you for letting me know your story - what a traumatic experience for you although it sounds as though your story has a happy ending. My daughter's hoarse voice and sore throat tend to come and go - some days her voice is absolutely fine and other days she's really croaky. I'm pretty certain it's caused by her hypothyroidism but it's always good to be aware of other possible causes.
That is interesting. My partner is deaf and I have had to lower my speaking pitch and speak more loudly, so I am hoarse because of it. It's just as well we don't talk much.
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