Hi All,
In April my levothyroxine was increased from 50 microgram to 100microgram. Since then i've had sore throat and found myself waking in the night fasping for air. The gp doctor said it would take time for my body to adjust and this symptom should get better.
The symptom is still there and worse in the morning when i take the levothyroxine. So went back to gp and now they have flagged it as a suspection of cancer. Any thoughts would help! Thank you x
noteboo
I've had many increases, decreases, increases again, in my dose of Levo since starting it in 1975, dose changes always the standard 25mcg at a time, and I've never experienced a sort throat from an increase.
First of all, did you have a change of brand when you increased from 50mcg to 100mcg (was that a 50mcg jump or did you have 2 increases of 25mcg each?)
If the brand is the same as before then in your position I think I would do a little experiment. I'd drop back to my original 50mcg and see what happens. Does the sore throat eventually go away? If so I'd then make a small increase of 25mcg or even 12.5mcg, again see what happens.
So went back to gp and now they have flagged it as a suspection of cancer.
Is this being investigated? If cancer is suspected there is a 2 week pathway isn't there?
Thank you SeasideSusie xx It was increased straight to 100micrograms and is the same brand Almus. I was told about suspection of cancer on friday so waiting for the appointment letter to come through. In all honesty i did not hear much after she mentioned that. She said they would put a camera down the throat. Sore throat did dissipate during the day initially but since June it has been constant one to a point swallowing hurts... been on liquid and soft food to help.
noteboo
OK, so no problem with it being a reaction to any excipients that may be different if you had changed brands.
Hopefully they'll sort your appointment out very soon, but you have Hashi's and it could be connected to this so, as Lalatoot says, try not to worry.
Thank you xx
Best to get it checked out. I would think that it is more likely to be the thyroid from my experience rather than the levo. Don't worry as if it is an inflamed thyroid or a nodule the majority are not sinister.
Thank you Lalatoot, did you have a similar experience and if you don't mind could you share please.
For 2 - 3 years I have suffered from sore throats and related voice loss. At first my thyroid blood levels were all wrong too and I was very hypo. It is only now that my blood results are looking good and other symptoms have gone that i realise the sore throats and voice loss are not governed by the actual hormones. But when my voice goes there is swelling and tightness around the thyroid area. This time it has taken 2 months of me doing nothing to see, feel and hear an improvement - it is so obvious that everyone remarks on my voice. Unfortunately all endo consultations are by phone and they dismiss my theory without further examination even though they can hear my voice. On the advice of the GP I am now awaiting an ENT appt.
So if you can get it investigated now go for it.
Thanks Lalatoot x I hope you get seen by the ENT soon and they diagnose and treat. 2-3 years is way too long. Interesting you mentioned sore throat and voice loss are not governed by hormones. I will keep you all in loop with regards to my investigation x
It seems that when I do more than my body thinks I should physically, something happens and my throat gets sore around the thyroid particularly the right hand side, the area gets firmer and I can feel a lump in my throat. The only theory i have is that the thyroid is sensing it should be working; tries to work but just gets inflamed or a nodule enlarges. I have to add that an endo who has only spoken to me on the phone for the last year dismisses this as ridiculous but admitted that she had no idea what was happening. But in true endo fashion did not wish to see me face to face or organise a scan - instead suggested ENT and to ask my GP to arrange an appt.
Really hope the ENT will arrange a scan for you quickly. The wait feels forever. I went for a physical check at gp on friday and was later told on phone that they suspect it as cancer and asked me to keep an eye for the post... that is all i was told and i have no clue if it is thyriod cancer or throat cancer. Who i am being referred to? so just waiting for the postman.
Most thyroid lumps are benign . If it is cancer thyroid cancer is one f the most easily treated. I have had time to read up!!
Thank you!
Got the letter from ENT. Help me understand why a thyriod issue is referred to ENT? Thanks
just tagging Lalatoot so she sees your reply 
I don't really know , just 'thinking aloud'.... but i've always assumed a referral to ENT is not specifically to look for a 'thyroid' issue .. it is to rule out anything in the throat as a cause for the sore throat.
I suppose ? they would be able to tell if a goitre was squashing the throat area. but other than that i don't think ENT can see anything about thyroid ..... maybe they do thyroid ultrasound scans too ?
tattybogle & noteboo
I had an endoscopy under ENT care to check my throat as it was intermittently sore & with voice changes, ie hoarse and dry.
Thyroid hormone receptors have been found in the larynx, proving that thyroid hormone acts on the laryngeal tissue. Hoarseness & reduced range are common with inadequate thyroid hormones.
noteboo
Also if thyroid gland enlarges or gets a lump/goitre as in Hashi, the vocal chords can become pinched due to their snug proximity. ENT were also going to perform an FNA but then it was deemed unnecessary.
It is wrong of your doctors to worry you with cancer scares before other less serious conditions have been ruled out. An endoscopy & possibly an FNA will help them determine what is wrong. You might need a scan as well.
Try not to worry too much 😊
Thanks radd. They also referred me to breast clinic with suspicion of cancer. Due to sudden increase in levothyroxine it gave me breast pain and swelling on my left side. But the letter shows suspicion of cancer. I just don't get it how loosely they have been using the word and it frightens me to go to them with anything in the future.. need to change gp for sure.
thanks tatty.
Beyond me... Thanks tattybogle x
It is a grey area a friendly GP explained to me. ENT are the surgeons who deal with throat issues caused by a physical problem. Endocrinology deal with thyroid hormones. I am in that grey area. Endos say your throat problem - swelling at thyroid, sore throat, voice loss is not related to thyroid as your blood results are pretty good must be caused by a physiological problem in the throat so ENT problem.
Now some endocrinologists will deal with physical problems of the thyroid and organise scans and examine goitres....why i had to end up being overseen by a team of job's worth, unknowledgeable, unhelpful, so-called endos I don't know. Anyway friendly GP has referred me to ENT.
perhaps it's because 9/10 Endocrinologist's have forgotten where the thyroid gland is , and need to get ENT to draw them a picture, before they can see you ?
Good point! I also got a letter from ent this week to tell me that they had got a referral from my GP and that this letter was to tell me that I had been put on the waiting list for another letter. The next letter will tell me when they are ready to make an appointment to see me. You couldn't make the NHS up . And that is not a slight at the nurses and staff working hard. It is a service that has lost its way and no is longer fit for purpose in its current form.
sorry the comment of laugh was for the above comment... I've received the same and that a phonecall will follow for the appointment.
Haha! this made me laugh x
Yes it happened to me too for a few weeks (4 weeks or so) half a year ago and it felt very unconfortable. Now it is gone. I dont know what could have caused it, so I tried not to think about it and give more time to it, and now I don´t feel it anymore. I´ve been slowly raising meds too lately. Dont know if it is related to that or to a decrease/increase in inflammation as I also cut out gluten at that same time. Hope this helps. I´d advice to give time to it
I hope your GP didn't frighten you with his suspicion.
Do you take levo with one full glass of water and wait an hour before eating? We usually do blood draw as early as possible and also allow a gap of 24 hours between last dose of levo and test and take it afterwards.
If we get a blood test later in the morning, it might not be beneficial for us who're hypo.
noteboo,
If you have Hashi & raised antibodies, any changes in thyroid hormone levels can instigate a change of activity in the thyroid gland inducing a Hashi attack. This can result in an increase in white blood cells to the area that will becomes inflamed & swollen.
Thank you. Will look up Hashi attack.
Looking at previous post
healthunlocked.com/thyroidu...
GP should have increased dose levothyroxine to 75mcg 9 months ago
Leaving you too long on only 50mcg and then increasing by 50mcg was poor care
Dose is stepped slowly upwards in 25mcg steps until TSH is ALWAYS under 2. Most people when adequately treated will have TSH around or under one and Ft4 and Ft3 at least 50% through range
Did you get vitamin D tested
Recommend getting FULL thyroid and vitamins tested privately after minimum 6-8 weeks on 100mcg levothyroxine
Important to regularly retest vitamin D, folate, ferritin and B12 at least annually
What vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Thanks SlowDragon. Did have VitD and others checked and was prescribed 50,000 iu per day for 3 months in Feb. The sudden increase in levothyroxine also led to breast pain and swelling to which they have referred to breast clinic and again using the cancer as suspicion.
So vitamin D needs retesting and likely to need ongoing maintenance dose vitamin D for life
Which brand of levothyroxine is 50mcg
Which brand of levothyroxine is 100mcg
Many people find different brands are not interchangeable. Teva brand in particular upsets many, many people
It’s extremely common to need to increase dose levothyroxine SLOWLY. That’s why Usually increase is in 25mcg steps, sometimes necessary to be in smaller step of 12.5mcg
Retesting 6-8 weeks after each dose increase
Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after.
High cholesterol confirms under medicated and hypothyroid
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Low ferritin levels can cause tight chest and breast pain. Low iron and ferritin are common when under medicated and hypothyroid
When were iron and ferritin levels last tested
This was tested along with with Vit D was told the range was normal. Will request for bloodworks... wild goose chase sadly.. Thanks SlowDragon
ALWAYS Get actual results and ranges on all tests
You are legally entitled to printed copies of all your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
NHS only tests and treats deficiencies
But we need OPTIMAL vitamin levels on levothyroxine
Vitamin D
NHS will prescribe if under 50nmol
Some CCG areas prescribe if under 75nmol
But aiming to keep vitamin D over 100nmol with Hashimoto’s
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Ferritin
Ferritin range is typically 12-150
GP should do full iron panel test for anaemia if ferritin is under 30
Aiming for ferritin at least half way through range at 70
B12 range typically 180-680
Aiming for Serum B12 at least 500
NHS rarely tests or treats unless B12 is below range
Folate want at least half way through range
Again NHS only prescribes if folate is deficient
Down to us as individuals to test and maintain optimal vitamin levels
Looking at your first post
healthunlocked.com/thyroidu...
You have heavy periods. This leads to low iron and ferritin
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s (or Ord’s thyroiditis if no goitre)
Have you had coeliac blood test done yet
If not you need one before considering trial on strictly gluten free diet
Increasing Levothyroxine 
Can increasing dose of Levothyroxine cause stomach pains and diarrhoea? 
levothyroxine increase
Increase in Levothyroxine
is levothyroxine causing my lower lip split & sore
