Swollen and painful back of throat

[Florence05]

Hi, I've been on levothyroxine various doses for over 20yrs. Recently I've noticed significant hair loss, sore throat and my blood pressure has gone up. I've had two blood tests, but GP says they are normal. Recent test is TSH 2.37, and free T4 14.5. I'm on 100mcg a day. I am very concerned with the throat and have been taking paracetamol to reduce the pain. One morning the throat was so swollen I was struggling to speak/gulp and felt I was going to choke - took some antihistamine as this sorted the issue previously. Due to speak to GP again so would welcome some thoughts on how to approach this as dont seem to be getting anywhere...

[Lalatoot]

You could ask for a referral to ENT.

[Florence05 in reply to Lalatoot]

Thank you - thats an excellent idea. Will do.

[Jaydee1507 Administrator]

I'm sure some of the more experienced folk will come along shortly but your TSH is too high and you could likely do with an increase. A TSH closer to 1 would probably help.

[SeasideSusie Remembering]

Florence05

Did you do your test as we always advice here:

* No later than 9am

* Water only before the test (certain food and drink can affect results)

* Last dose of Levo 24 hours before test

* No Biotin or B Complex or any supplement containing biotin for 3-7 days before test

What is the reference range for the FT4 result please, ranges vary from lab to lab so it's important to quote ranges with results for us to be able to interpret them.

Your TSH is suggesting undermedication.

Do you have Hashimoto's (autoimmune thyroid disease, confirmed by raised thyroid antibodies)?

[Florence05 in reply to SeasideSusie]

Hi, sorry but I dont know what the ranges should be difficult to find this out as done via NHS lab? Is this something the GP could tell me. I wasnt aware that there were guidelines to follow before having the blood test and I did not follow any of these. Never been told to do this b4. I will query this with GP too. Dont know about the Hashimoto either - I am assuming this can be done via another test. I feel that I need to follow up a lot of these with GP. Thank you for taking the time to respond. Today I feel absolutely exhausted could sleep for a week.

[SeasideSusie Remembering in reply to Florence05]

Florence05

When having any tests, give it a couple of days then ask the receptionist (not the GP) for a print out of your results. In the UK it is our legal right to have these. Some surgeries offer online access to results so you could ask if your surgery does and if so then register for it. If not then get a print out and the results with reference ranges will be on there. The reason why it's best to ask the receptionist is because generally doctors don't particularly like us having them or understanding them.

The reason we ad use doing tests as outlined above is because most doctors only look at TSH and adjust dose by that. So to avoid a reduction in dose or to obtain an increase when necessary we need the highest possible TSH. TSH is highest early morning and lowers throughout the day, so a 9am blood draw is the highest before the gradual reduction that takes place.

Biotin can give false results so any supplements obtaining it need to be left off for a few days before any blood test.

You won't be told any of this by a GP or nurse because they basically don't know about it and will say it isn't necessary so we just don't discuss it with them.

So if you want the most accurate results then follow the advice above.

To know if you have Hashi's you need thyroid antibodies testing. Doctors call it autoimmune thyroid disease and it's the most common cause of hypothyroidism. It doesn't change the treatment.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.

[Florence05 in reply to SeasideSusie]

Hi thanx for your reply. I got ranges which are 0.3 to 5.5 TSH, I was 2.37, and free T4 is 10.5 to 22 and I was 14.5. Just had conversation with nurse practitioner who just insisted that my thyroid is fine and based on these results and levels would seem so. I've pushed to have further investigations, but honestly why is it so hard to get them to listen. I'm clearly unwell, but if I didn't push so far as they are concerned that's the end of it.

[SeasideSusie Remembering in reply to Florence05]

Florence05

OK so we have

TSH: 2.37 (0.3-5.5)

FT4: 14.5 (10.5-22)

I mentioned above the levels where most Hypo patients on Levo feel best.

TSH should never be above 2 - see GP online:

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

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(Not working as expected?)

You can obtain a copy of the article which contains this quote from ThyroidUK

Email : [e-mail]

and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.

In addition point out the following:

nice.org.uk/guidance/ng145

where it says

Guideline development process

How we develop NICE guidelines

Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

So your GP should be looking at the patient, not numbers, and taking into account how you feel, if you are symptomatic and whether you are optimally medicated to alleviate all symptoms. Currently you are undermedicated to have such a high TSH and FT4 is only 34.75% through range whereas most of us would need that at least over half way through range, possibly around 60% or even 70%.

Calculator here: thyroid.dopiaza.org/

[Florence05 in reply to SeasideSusie]

Hi - well its been 3 months or so since my last post. I have continued to be unwell, had a referral to the ENT said throat was ok, possible silent reflux, but could not comment on my thyroid as that was the speciality of an endocronologist (in my ignorance I did not know these were different areas - I had thought the ENT specialist could advise on thyroid too ... - a lesson there). Anyway still have hair loss, broken nails, up and down with the tiredness and unexplained discomfort in my throat. I am taking gaviscon for the reflux sort of working!! And I feel like I am taking far too many paracetamols for my throat (most days at least 2) as its very uncomfortable. Sometimes gulping in an issue. Yet another return to GP and further blood test - now showing TSH 5.84 (range 0.35 - 5.5) this was previously 2.37 in July (same ranges) and Free T4 14.5 (range 10.5 - 21.0) (no different to last result in July). GP now says she want to reduce by levo to 75mcg. Currently on 100mcg. I was pretty surprised as I had assumed I was under medicated? I was expecting an increase. I did the test at 8.50 am, no drinks before and no levo taken before test (last time taken would have been the previous day so approx 24 hrs before). So I think I did all of that right, but such a jump in TSH seemed surprising?? Anyone got any thoughts. I am currently waiting for an appointment for a CT scan of throat to check for nodules, but considering a private referral now as dont feel I am getting the proper treatment. So far 3 doctors, one nurse and all on the telephone. Getting a little concerned as I am out of my depth with the medical side of things but I dont feel well. I have asked to speak to GP before dose reduced so I an understand there view on this, so would welcome any thoughts on this as to what I should be saying. Thanks in advance.

[SeasideSusie Remembering in reply to Florence05]

Florence05

I did the test at 8.50 am, no drinks before and no levo taken before test (last time taken would have been the previous day so approx 24 hrs before).

First thing to say is you should not go without water, the advice is

* Water only before the test (certain food and drink can affect results)

So you risk being dehydrated without having any water and this can make blood draw difficult.

Yet another return to GP and further blood test - now showing TSH 5.84 (range 0.35 - 5.5) this was previously 2.37 in July (same ranges) and Free T4 14.5 (range 10.5 - 21.0) (no different to last result in July). GP now says she want to reduce by levo to 75mcg. Currently on 100mcg.

This is madness, if your TSH was below range then it would be understandable that your GP would want to reduce Levo, some of them get very twitchy about low TSH, but it is over range which means you are more hypothyroid. I think your GP is confused or totally ignorant of how to treat hypothyroidism.

No wonder you don't feel well.

Ask your GP for the reason as to why the reduction? Point out that your TSH is higher than before, now places you over range, and this should mean that you need an increase. You have all the information you need to discuss this and prove your point in the post above with links, send them or take them into the surgery.

Refuse the reduction.

As for your throat, as mentioned before ask for thyroid antibodies to be tested and you could also ask for a thyroid scan.

[Florence05 in reply to SeasideSusie]

Thanks Seaside Susie. Thankfully the next GP I spoke to agreed with me and said absolutely it was an increase for the levo not a decrease - so thats good. So now going to be on 100mcg and then 125mcg on alternate days - retest in 3 months. Finally got someone to actually listen to me. Fingers crossed it starts to kick in. I would say to anyone else reading this do watch the video of Prof Toft (see above). It's very interesting - got some really good points out of it. Its quite long but stick with it. As for the throat thing - now taking esomeprazole and I cannot tell you how much better my throat is already (which is such a relief). Taken 6 months from when I first started feeling unwell to how I am now feeling - still need to review but I am hopeful. So for anyone reading this pls keep going back to the GP until you are heard.

[SeasideSusie Remembering in reply to Florence05]

Best to try and stick with this GP if you can.

As for your esomeprazole, remember to keep it well away from your thyroid meds, at least 4 hours, more if possible. PPIs lower stomach acid and impairs absorption levothyroxine so you might even need more Levo as a result of taking the esomeprazole.

Keep a check on your nutrient levels - Vit D, B12, Folate, Ferritin - as we need good levels of these, if we don't have enough stomach acid we can't digest food properly or absorb the nutrients from food and we end up with low nutrient levels.

[Florence05 in reply to SeasideSusie]

Thanks Seaside Susie. Great advice. In fact I recall Prof Toft saying about the esomeprazole and the acid thing - so thanks for reminding me. Currently taking the levo first thing and the esomeprazole early afternoon, but I will make sure to take them quite separately as you have suggested. Youd have thought the GP could have said that to me, thank goodness for you and this website. I was thinking of taking a B12 supplement do you think thats a good idea?

[SeasideSusie Remembering in reply to Florence05]

I was thinking of taking a B12 supplement do you think thats a good idea?

It depends whether you need it, if not you'd be wasting money. Have you tested? B12 and folate work together so both should be tested.

When taking B12 we also need a B Complex to help balance all the B vitamins so that's 2 supplements. If Total B12 is lowish but over 500pg/ml or 370pmol/L (or over 100 for Active B12 test) then the amount of B12 in a good B Complex would probably be enough without the need of a separate B12 supplement.

[Florence05 in reply to SeasideSusie]

Thank you - will look into this. Thank you again for all your advice very helpful.