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Levothyroxine - sore throat?

(23 Posts)
DuhNuh Tue 02-Jun-15 13:46:08

I've been on 50mcg levothyroxine since January having been diagnosed with postpartum hypothyroidism. My levels were checked again in March and were found to be back within normal range. Generally I do feel better but I seem to have a persistent dry/sore throat.

Has anyone else on levothyroxine experienced this? Is it likely to be something else?

(I find it hard to figure out what's related and what's not these days, and what needs to be seen by the doctor, as the diagnosis has triggered some health anxiety issues. Anyone else in the same boat?!)

DuhNuh Tue 02-Jun-15 19:41:08

Anyone?

Clarella Wed 03-Jun-15 22:10:41

Hi Duh, welcome to the thyroid world!

I'd heartily recommend asking for your results - printed is best. 'Normal' is quite a wide range and most people feel best at the lower end.

For a really reputable and useful book (to show to a gp who might not address this) is the BMA understanding thyroid disorders by Dr A Toft.

Thyroxine is simply a prohormone; its shouldn't cause a sore throat. It's possible you are still recovering or could do with a higher dose. It might be worth mentioning your throat is sore (do you mean to swallow?) but it could be un related or even reflux?

You can get nodules on your thyroid, has anyone examined it? If it's your neck it probably is worth mentioning.

Keep an eye on symptoms; you are likely to need a higher dose as most people's thyroid a slowly deteriorate. 100-150 is a more usual dose, depending mostly on weight.

Personally constipation eases when my levels are good.

Clarella Wed 03-Jun-15 22:13:05

Find out your Tsh result and post here. Most people feel well / best under 2, even better around or just below 1. I'm now 0.44 on 125/150 thyroxine alternate days and it's perfect for me. But everyone is different.

ProfessorPickles Wed 03-Jun-15 22:16:49

I've been on it for about 6 months on the same dose as you op and my throats been bad for a while but I never connected the two, if there is a connection to be made.

It isn't sore as in raw it feels a little swollen and tender like a throat infection most mornings when I wake up!
Is yours the same or is it more like the raw soreness?

Clarella Wed 03-Jun-15 22:17:06

Also, if tsh is good and you still feel unwell it's worth checking ferritin, b12 and vit d (and folate with b12). These all need to be good to great. I experienced lowish ferritin recently and was not at a well. They all help the thyroxine convert to t3 which your body uses, and generally help you feel better.

Thyroid issues can take a good 3 months or more to resolve due to the half life if thyroxine, so you could still be recovering, though I wouldn't be surprised if your Tsh wasn't the lower end of 'normal'.

DuhNuh Thu 04-Jun-15 23:46:14

Sorry just checked the thread and saw I had some replies.

My TSH level was 2.34 and T4 was 14.5. My TSH was 14.62 in January and T4 was 9.3.

It's more of a dry sore throat - I find I'm drinking a lot of water to compensate. Funny constipation is mentioned: I had noticed this week that I have been a bit constipated.

I am indeed very new to this world and still a bit flummoxed by it. And very flummoxed by how common it is and yet how few GPs really know how to treat it. At my last appointment, which I had to request after my last results came back and I was just told "they're fine" I was told to come back in 6 months for my next blood test. Considering I'm so new to it I had thought they'd want to see me sooner but is this normal?

My weight hasn't changed at all so I'm not showing symptoms in that way. I was also very anxious and generally tearful/down around when I was originally diagnosed but that has also improved a lot (my GP thought I had PND and it was only after I requested blood tests that they found the thyroid problem. Makes me wonder how many other women are automatically diagnosed with PND when it could be postpartum thyroiditis). The other symptom I had before but is now much improved was very brittle nails. I should add that I'm still breastfeeding and my DD is still waking in the night for feeds so it's impossible to judge whether I am inordinately tired or not!

So in many ways I do feel a lot better so I'm confused - I've read quite a bit about getting the dosage right for the individual but I'm finding it hard to understand how.

Was anyone else diagnosed postnatally? If so has it improved or got worse over time? I've read that hashimotos triggered postpartum can resolve itself, but my GP disagrees.

DuhNuh Thu 04-Jun-15 23:46:35

Sorry for the essay!

Clarella Fri 05-Jun-15 07:59:27

Don't apologise!

My gp said "we're not great at managing it" - the issue is that the Tsh range is quite wide and in all honesty even endos recognise you need to be the lower end to feel well.

It's unlikely to resolve its self I'm afraid, but I suspect it's still deteriorating slowly. It can waver a bit - mine did, set off by the pill (got better when I stopped as oestrogen affects things) but then went down hill later on.

Personally, if following the guidelines in the BMA book - by a reputable endo, I feel you could be better replaced, with Tsh 1 or just below and t4 around 20. If you get the book from Amazon and show the gp and ask - I'm still getting symptoms could I try a higher dose please - I don't see why he would refuse. They really are supposed to go by how you feel these days, and you can have a Tsh of 0.3.

The other thing to remember is that thyroid things take a really long time to impact - the half life of the hormone is long so it takes a while to build up in your system, hence not testing for a few weeks after a change, and then it can take time for the body to heal.

I wonder if your sore throat is thrush? Changing hormones can trigger. I've suffered recently due to some dose issues.

Clarella Fri 05-Jun-15 08:10:57

I think nice guidelines technically say new mums with pnd should be tested for thyroid.
The 6 month thing is because they know you may go down further and this is to check - but in the gps opinion the Tsh was correct. Another would consider a slightly higher dose and retest in 3 months.

All I know is I'm bf my 2.5 son and now have really good thyroid levels plus built up muscle again too (thyroid issues weaken muscle) and I'm coping really well with his 2 year molars!

My Tsh was 13 at 6 months post partum and I was very weak and ill. If not been put back on the right dose due to several reasons and didn't think to q it.

However I didn't feel well when dose put up, because - I now know - my ferritin levels were borderline. I have had deteriorating muscle for 2 years due to this not being addressed until I got very bad muscle symptoms and they looked at iron.

If they haven't done it, please ask for a ferritin test (b12 and folate too) as iron can be low post partum and won't help thyroid matters.

My ferritin was 55 - but now it's over 100 ive begun to recover. On mn ive seen many say it should be 70-90. Certainly my gp classed 80 as the first normal result I'd had.

PeaceOfWildThings Fri 05-Jun-15 08:16:06

There's something called Sjorgen's syndrome I think, which is also an auto immune disease and causes dry eyes, nose, throat etc. Some people with autoimmune thyroiditis get it because if you have one autoimmune disease, there is a suceptibility to having others.
I find that if my dose is too high, or my thyroid decides to puy a bit of effoet in and work for a change that day, I can get an odd sort of pressure in my thyroid, coupled with not feeling so cold, heart rate a bit faster, more anxious than depressed, and too much overthinking/fast talking. I take 25mcg less on a day like that and it helps even things out. (When I feel slow, cold, forgetful and depressed, I take an extra 25mcg, so it evens out).

Clarella Fri 05-Jun-15 08:25:20

http://www.amazon.co.uk/Thyroid-Disorders-Understanding-Family-Doctor/dp/1903474191

Best 5 quid I ever spent. It listed that sertaline can increase thyroxine need which was one of the reasons I had issues (I was put on it instead of looking at iron, I wasn't actually depressed but wasn't sleeping and very out of it - which I now know are symptoms of iron. Sertaline did help though but 'his' the real issue of iron and the fact I had severe spd/ hypermobility syndrome. I've been off work 6 months trying to untangle this mess and basically being very frail. As soon as iron and thyroxine was spot on I have begun to recover, and physio has been able to have a positive effect. Anything I tried before didn't or made things worse as my muscles were so weak)

Regarding bf - please take a good vit d supplement, pregnancy and bf drain this and it's also a key thing for thyroid peeps (and everyone). And give baby drops from 6 mo of not having formula. I'm taking a high strength mouth spray from Holland and Barrett, they do a nice infant vit d drop too.

I also take sainsburies version of berrocca (no aspartemene) which has lots of b vits and vit c - extra vit c and bs will really help, or you could try ferriglobin which has a bit of iron too. I'm a member of LA leche league and looked into that this was ok, you do use a lot of b vits etc when bf but your body will be using extra to help the recovery process.

It's really hard as low thyroid does actually give you anxiety as you know you're really incapable - then asking Dr for help is tough! But keep being vigilant about symptoms, tell gp, be assertive and ask for a better Tsh result (show toft book) and ask that other causes of tiredness are checked and ruled out.

Clarella Fri 05-Jun-15 08:29:42

Good point peace.

I think it's mentioned in the toft book, it certainly lists other autoimmune issues that can go hand in hand. Again, worth knowing about but you need to get thyroid right first.

Can't remember if I posted below but my perfect dose is x 3 150, x 4 125 (I now use a pill box, but used to do alternate days taking the odd dose on an odd day, the even dose on an even. Since child I rarely know what day it is!)

PeaceOfWildThings Fri 05-Jun-15 08:30:43

Clarella, I've had a very similar set of experiences, only mine was dragged out over a couple of decades and several house moves, so that it ruined my ability to hold down a full time job and sometimes made me feel a failure!

Clarella Fri 05-Jun-15 08:32:48

kellymom.com/nutrition/vitamins/vitamins/

See vit d info, it's also on nhs website. Though nec amounts vary, nhs go for absolute minimum needed to stave off osteomalacia.

Clarella Fri 05-Jun-15 08:37:28

Peace sorry to hear that - im having counselling to cope with what can only be described as a trauma linked to anything thyroid/ and or fatigue.

I had a nightmare when first diagnosed (I wasn't - put on seroxat, awful time of my life) and then I now know for long periods I wasn't properly managed / didn't know I should be going back to gp if felt rubbish, waiting for them to contact me.

Long term constipation led me to gp and she said she felt my previous Tsh should have been better.

Lots of mh issues relating to trying to cope with fatigue and sometimes feeling well, others not,

Also caused issues in my marriage as I've been so ill.

However, I now see how much better I am with a good dose and good iron.

DuhNuh Fri 05-Jun-15 10:54:50

Thank you - I've ordered the book to try to get a better understanding of all this.

I've had counselling too - initially because of the anxiety but that was exasperated by the diagnosis: being diagnosed with a chronic condition after a lifetime of good health triggered awful health anxieties, not helped (I think) by postpartum hormones. I feel like I'm slowly emerging from a dark fog.

I will try to get better at remembering to take my vitamins too! It would be interesting to look at any studies of the impact of breastfeeding on the thyroid problem what with progesterone being so high.

Am I right in thinking you can have fluctuations of thyroid function through the day? I take my levothyroxine first thing and by evening not only am I very tired but that is when I get anxiety symptoms (when I get them as that has greatly improved)

DuhNuh Fri 05-Jun-15 11:00:02

Another question, out of interest: I haven't experienced any impact on my weight (luckily). My doctor was dismissive of this saying weight gain isn't a symptom for everyone. What is others experience of this? I'm nervous that once I stop breastfeeding I will gain weight. I know that sounds horribly vain but I have always been lucky with my metabolism (pre babies) and been able to maintain a healthy weight. My mum is very overweight so I have always been conscious of not following her down that route

PeaceOfWildThings Fri 05-Jun-15 15:57:07

Well, you have cheered me up to hear I'm not alone in needing a bit of counselling to adjust to the late diagnosis and treatment of my thyroid (and iron deficiency) problems! smile

I was always very slim, then got married and put weight on...prefnancies made it worse. Tried all kinds of lifestyles....currently find that, with the right balance of levothyroxine and iron per day, plus a 'clean eating' dairy free diet and daily 10-30 minute workouts, I can lose/ maintain weight. But, if I drop one of the three (have much dairy, stop taking levo or stop exercising completely for a qeek or more) the weight piles back on.

Many people with thyroid trouble have gluten intolerance or even celiacs disease (another auto immune one) and others find that the potato/tomato fan ly is what makes them bloated. It's a matter of trial and error to find out what suits you.

Clarella Fri 05-Jun-15 18:06:30

Sadly I think needed mh support with thyroid is v common sad but I does really affect so much of your life as you just can't function.

I don't believe bf has any impact; the lact consultant in my local lll group is hypothyroid and I've been assured there no difference. I believe bf actually affects your insulin growth factor (or what ever it is - the hormone that the 5:2 fasting diet triggers) so it's actually beneficial in a way,

No, I've been slim whole life and actually loose weight when very underactive, just puffing up a bit when slightly over. You actually loose lean muscle mass.

T4 is very stable as it has a long half life - naturally produced t4 does have a circadian rhythm as does Tsh. It's worth always getting your thyroid test at the same time of day for this reason. T3 does vary during the day; this is why it can be difficult to rely on as a test. An endo might test t3 to check for conversion issues (ie body not turning t4 into t3 effectively) but really should check other factors eg that Tsh is low (around 1), iron (ferritin) levels, b12, vit d, folate. B12 can be an issue as pernicious anaemia is another autoimmune issue that can be linked. But again you won't feel too great if it's low.

I was told by an endo (and prof) to get tests in the morning, not to take that days thyroxine till afterwards. To also keep a record of Tsh and any other results and how you feel.

I have to say, in a way, telling others my experiences and how to look after yourself helps a bit to make up for the sadness I experienced when things were not well addressed.

I have found the British thyroid foundation (charity) very helpful too.

Their website alerted me to the fact that a brand of thyroxine was faulty and being withdrawn (TEVA) - I was pregnant at the time and had a difficult time with my levels, also triggered anxiety as I knew it was important to have good levels in the first trimester - they weren't due to the brand, it was too weak. Then I switched and went too high.

If you are planning a second child I would defiantly ask to be referred to an endo, or at the least make sure gp follows the nice guidelines. I had to fight a bit to get my gps to realise you had to up your dose.

Clarella Fri 05-Jun-15 18:10:13

I will say though, if well managed, it shouldn't be an onerous difficult condition, it's just making sure you are well managed! Most thyroid patients have to be very aware of their condition - but so do diabetics, the difference is we rely solely on the gp to adjust according to blood tests, and diabetes gets out of control very quickly. Thyroid things are so slow to manifest and slow to get on top of.

Clarella Sat 06-Jun-15 16:12:08

Peace and duh - I sort of find this helps explain the anxiety process. I've read about the impact on the amygdala.
journals.plos.org/plosone/article?id=10.1371/journal.pone.0026582

DuhNuh Sun 07-Jun-15 20:26:15

Thanks everyone for your responses. I am going to read up some more and get a better understanding of it x

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