Hi everyone, Is it normal to get an aching pain in the front of your throat on and off? Sometimes when I swallow I feel like I have something stuck in my throat I’ve been getting pain also in the sides of my neck just below my ears all the way down to my shoulders. I’ve been putting it down to stress because the back of my neck has been the same on and off but more painful and this is causing headaches as well. I’ve already spoken to my gp who doesn’t think it’s anything to worry about but to stretch and build the muscles especially my traps as these are tight. I don’t know what else to do it’s making me panic so much and cause I keep convincing myself it’s something more serious like head or neck cancer. I’ve also been feeling so cold lately. I keep putting it down the my girlfriends basement flat and maybe it’s just colder but I don’t know. I just don’t know what to do an can’t stop myself freaking out.
Hashimotos neck pain: Hi everyone, Is it normal... - Thyroid UK
Hashimotos neck pain
Try not to worry too much, you will stress yourself out even more and it will get worse. I am currently experiencing the exact same thing you describe. I have hashi’s and have put it down to a swing in my levels - especially as I’ve been a bit naughty with my ‘healthy’ diet over the last few weeks. I’m hoping it will ease off just as quickly as it came. I find that my thyroid can cause all sorts of weird aches and pains if I stray from my rather regimented healthy diet and also if I get even the tiniest bit stressed about something x
Thank you for the reply x. It’s so easy to stress out. That’s interesting you say about diet. Do you find symptoms are worse if you eat a lot of junk food? I still have a headache and neck hurts this morning and I’ve not even got up yet. I’ve been contemplating seeing a chiropractor for months now but they’re just so expensive long term. I do try not to stress out but sometimes it’s so hard not to.
A lot of people who have thyroid problems have neck pain I do sometimes. I even had a neck x-ray at one time because it was even hurting my neck to move it while driving. I regret having the neck x-ray because I think it might have caused my goiter to react in a bad way.
I’m so tempted to get some kind of imaging done. Maybe a safer option like ultrasound or MRI. It’s getting so frustrating.
You need to get FULL thyroid and vitamin testing
Looking at previous posts you had dose increase in levothyroxine to 100mcg about 3 months ago
Presumably bloods were retested at 6-8 weeks after increase?
What vitamin supplements are you currently taking
Do you always get same brand of levothyroxine
Do you have Hashimoto’s?
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
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...
monitormyhealth.org.uk/thyr...
Anxiety is common hypothyroid symptom
healthunlocked.com/thyroidu...
These were done couple weeks after dropping back down to 75mcgs.
If the link doesn’t work, on my last post right at the end of comments is my results.
I replied on previous post....results show under medicated
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
Hi
I experienced awful neck pain throughout my thyroid journey (I have Hashimotos too)
As you have described it sometimes feels something is stuck in your throat, I did everything to try and resolve it. It only went when I got on the correct medication.
I am strictly gluten free as well.
Are you on any thyroid medication and, are you strictly gluten free.
Best wishes
Peanut31
Thanks for the reply, It’s hard to find the right dose, 100 mcgs was too much felt like I was going insane. However now I’m back on 75mcgs I feel exhausted and cold all the time. I’m at a loss but I am in a stressful relationship atm so I don’t think that helps.
Going gluten free isn’t easy when I’m a relationship and your partner gets stressed over money having to buy things you wouldn’t normally. Even not buying gluten free foods and just sticking to things that naturally don’t have gluten and buying things you do need extra that you wouldn’t normally buy gets expensive. If that makes any sense.
It’s more likely you need to be on at least 100mcg .....but often it’s difficult to tolerate dose increase
Increasing in smaller steps is often essential
Also very important to take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Many people find taking levothyroxine at bedtime (or in middle of night) is better and more convenient than first thing in morning
I found being on 100mcg increased my heart rate by 10-15 bpm. I also found my mind raced a lot when on 100mcgs. However I did find I had more energy and wasn’t cold but then I got to the point I felt like I was manic and losing it like everything was too fast. My TSH went down to 0.14 though. I’m kind of scared to increase again even if I were to do it slowly. Doesn’t levothyroxine work for what you take that day? Like if you take 75mcgs one day that’s all you’ll get for that day and same if you take 100mcgs? I do take mine first thing in the morning so I could try night time.
Levothyroxine is a storage hormone
In theory (though I wouldn’t recommend it) you can take a whole weeks dose on one day.
When we take levothyroxine it takes 4-5 days for that days dose to be converted available for use
Many, many people find they need to increase in smaller steps than 25mcg
Many people end up on different doses as their ultimate dose. For example they may find 100mcg is too little, but 125mcg everyday is too much
Someone might take 100mcg 5 days a week and 125mcg 2 days a week
How much do you weigh in kilo?
This can give a rough guide to how much levothyroxine you are likely to need. Some people need more.
Essential to maintain OPTIMAL vitamin levels as this helps tolerate dose increase
Also extremely important to stick on one brand of levothyroxine if you don’t tolerate different brands
Which brand of levothyroxine are you currently taking?
Oh wow ok that’s interesting, I guess that’s why it took 3-5 days for me to feel normal again after coming down from 100mcgs.
At the moment I weigh 75kg.
All my vitamins are in good range at the moment I think there was one that was normal but not optimal, think it was folate.
My 50mcgs tablets are accord and my 25mcgs tablets are wockhardt
Does it make a difference if they are different brands?
Many people find Levothyroxine brands are not interchangeable.
Generally most popular/well tolerated are Accord, wockhart or Mercury Pharma
(also Almus and Northstar 50mcg and 100mcg are Accord)
What brand were 100mcg tablets?
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
List of different brands available in U.K.
dropbox.com/s/6h3h0qi4eqwi6...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
75 x 1.6 = 120
So this might be dose you eventually need
I can’t remember what brand I was on, I may have used up my 50’s and 25’s and then it could of been TEVA. 120 seems a lot, my mums heavier than me and she’s only on 25mcg although I do think she needs more but doctors always say she’s in range but that could be anything. I keep trying to get her to get her results so I can look but it’s not easy now with Covid.
25mcg is only half the standard starter dose of levothyroxine
Far too many doctors think levothyroxine “tops up” failing thyroid. It doesn’t. Levothyroxine shuts your own thyroid down and replaces it .... ..hence why guidelines are typical on dose by weight
Trouble is many medics don’t read guidelines
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical
hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
If been left on inadequate dose too long it can be difficult to tolerate dose increase. Common to need to increase dose slowly upwards
Perhaps increase to 100mcg once a week. After 3-6 weeks increase to 100mcg twice week etc
My new results came back already, however I didn’t realise that vitamin B complex had biotin in, only has 50ug per tablet though. This was taken at 08:35 in the morning before my levothyroxine dose.
TSH 2.83 mu/L 0.27-4.2 mu/L
T4 15.3 pmol/L 12-22 pmol/L
Wow I just read your story and I can’t believe what you’ve been through to get to the bottom of things and the right doses. I’m not sure if I have the mental strength anymore to figure things out. My heart rate has been in the low 50’s for around 4 years but I put it down to giving up smoking and drinking. I did wonder whether sertraline had slowed it down and cut that down to 25mg from 50mg about 4 months ago but nothings changed. When I was on 100mcg of Levo it went up to 60-70bpm and this really freaked me out, I do suffer with ectopic heartbeats and I do find magnesium helps this a lot. I may try the 100mcg a week and see how I get on but I’ll try do that after I have surgery in January. I don’t want to go changing things so close to it.
Resting heart rate of 60 is normal.....but after years of low heart rate it can feel odd
It’s common/normal to feel slightly hyper initially as dose levothyroxine increased. But that settles
Your results show you are under medicated
TSH should be under 2
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
This was on 75mcg (after reducing from 100mcg) ...how long since reduced to 75mcg
Suggest you try increasing to 75mcg & 100mcg alternate days.
Or even just taking 100mcg once or twice week until January
Which ever overall dose you decide, stick to it 6-8 weeks
Get a weekly pill dispenser so you know which dose which day
Retest in 6-8 weeks
Likely to need to increase to 100mcg everyday
When I first started 100mcg I thought it was amazing and I could do anything with the hyper feeling but after 6 weeks I then felt like I was going nuts. Started having racing thoughts and that freaked me out. Being on 100mcg my TSH went down to 0.14 mu/L and that’s a big difference from 2.83 now. I don’t get how it can make such a huge jump.
I’ve been back on 75mcg for 2 months now.
Do you think stress would increase your TSH?
Thyroid hormones are very strong....try a much smaller increase to start with
You may need to be on 75mcg and 100mcg alternate days for many months, before ready for next increase, especially as been left under medicated for so long.
Your whole metabolism has slowed down over long period of time. It can’t just increase overnight
When we increase dose levothyroxine it can take months and months for rest of endocrine system to catch up.
Hi
I never got on well with levo, so I self medicate on NDT with a small amount of levo added to it.
Stress is a major factor to Hashimotos, 100%. I was in a very stressful situation and I know it wasn’t helping my thyroid journey. I left this situation and cut all ties with that person. This may not be as easy for you, but I know it had to be done.
When I went gluten free, I went mad buying everything gluten free and that is very costly, but, it doesn’t have to be.
Veg and fruit , salad are gluten free, fish, chicken, beef, cheese, eggs, gluten free. I tend to stick to freshly prepared foods, they don’t cost a lot.
If I fancy any bread, I make my own keto bread rolls (GF) and they are delicious, the ingredients I buy go along way.
At the moment I’m enjoying eating hot chicken and bacon salads. Lettuce, tomato, cucumber, peppers then pan frying a chicken breast cut in strips with some bacon either smoked or non, cut those into strips, I add some grated cheese on the top too.
Delicious and filing.
I couldn’t find my sweet spot on levo, could you perhaps cut your 25mcg dosage in half if you can’t tolerate the extra 25mcg extra, may cut that up.
Best wishes & take care
Peanut31
Hi
I might look into NDT or maybe see a endocrinologist privately.
I’m starting to think maybe I’ll be going the same way. The situation isn’t getting better and I don’t see things improving and it really is at the point where I can’t handle much more.
At the moment we have meals from hello fresh cause my girlfriend can’t cook at the moment so maybe I’ll look for gluten free meals. I’m rubbish at thinking of recipes and get too stressed trying to find decent ones and this makes life so much easier right now. That said I do like cooking new things. Will have to look up a recipe for gluten free bread.
Thanks for the ideas.
Best wishes
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