Hi all, hope you are all well.
I have autoimmune hypothyroid, and am taking 10ml liquid Levothyroxine.
My question is does anyone experience painful swollen glands in their neck.
I do often, and it's always on the left side. It's really sore, also I find it difficult to swallow.
Any advice please.
I'm sorry that you're suffering at present with painful glands.
I'd request your doctor to refer you to an Endocrinologist
Thank you for your advice. My GP is next to useless. i have never seen and Endo. My GP is dismissive of everything I say. it's such a battle.
The problem with doctors (GPs) is that - with quite a large number - their knowledge of anything to do with a dysfunctional thyroid gland is poor. They seem to only take notice of the TSH (thyroid stimulating hormone) if they take a blood test but I, personally, know the struggle we have to go through in order to get diagnosed.
If you click on my name you can read a bit of my history to be - finally - diagnosed.
I am now well and that's due to finding Thyroiduk.org.uk before this forum began and it is helpful as many members respond of what helped them to restore their health.
Ask GP to refer you to an Endocrinologist (even if GP is reluctant) .
You can tell GP (it may not make a difference but worth a try) that you have had advice from Thyroiduk.org.uk.
Do you follow this method when getting a blood test for thyroid hormones:-
Always make the earliest possible appointment (even if you have to make it weeks ahead). It is a fasting test (you can drink water) and don't take thyroid hormones until after the test.
Ask also for B12, Vit D, iron, ferritin and folate.
Yes, thank you for the information. I do always have a blood test before 8.30. or as close as possible. I do also have Pernicious anaemia, but I am always having a battle with him. He only focuses on that, and the fact that my levels are high. I point out that they will be because I'm having injections. I have many other illnesses, but he has never asked, not even once about them. He knows it winds me up. I don't see the reason he keeps doing it. I was literally on my knees before my last injection I could hardly walk. But he won't listen. I've asked to change GP. Anyway, thanks again.
With Pernicious Anaemia you can request more frequent injections
Instead of once every 3 months, request every 2 months or every month
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may help improve B12 levels between injections
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement
My GP wants to cut my B12 to every 6 months. I'm not veggie and am well ant truly post menapausal.I've tried gluten free, but did not notice anything. I've never had coeliac test.
Ask advice on PAS Healthunlocked
They are B12 experts
GP can’t reduce number of B12 injections without your agreement
Thank you for that info, that's great news. I am a member of PAS. So I will ask them for their help. This GP I have is hell bent on stopping my B12. Surely that must be illegal. I could not survive without them. In 2019 he did stop them. And I complained to the surgery. Then they were reinstated (supposedly) I've told this episode on here before. The nurses pretended to give me the injections. I eventually got them reinstated , and a letter from the doctor to give to the nurses telling them to give me the B12, and he apologized. But he is still trying to stop them. He doesn't believe in taking vitamins.
Can you change GP
When were last thyroid and vitamin testing done
ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Do you split your levothyroxine into 2 smaller doses as on liquid levothyroxine
What strength liquid levothyroxine are you on
What’s the equivalent total daily dose levothyroxine
What vitamin supplements are you currently taking
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
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...
NHS easy postal kit vitamin D test £29 via
Come back with new post once you get results
Thank you. I've recently had bloods done for Vit D, and ferritin. They were both 16, half way through the lowest range. And he said that they are ok. He would not budge on the Vit D, he said it would be cheaper for the NHS to buy my own. Well of course it would. But I reminded him that I was on ferrous fumerate when I joined that surgery. So he reluctantly gave me a prescription, but for only one a day. He wanted me to buy my own. I pointed out that I am allergic to the fillers in a lot of things, and I wanted proper medical grade, because you don't know what is in over the counter medicine. I have sent a letter to the practice manager to change my GP, a week ago, but have not received a response.
Very low vitamin levels suggests your thyroid levels are not correct
What are your most recent thyroid results
Vitamin D is 16nmol?
Thyroid patients invariably need to supplement vitamin D continuously
See different GP
They are obligated to prescribe
You should be given a loading dose vitamin D
That’s 300,000iu in total over 6-8 weeks
5000iu per day for 8 weeks
Or 7000iu per day for 6 weeks
Important to retest vitamin D at end of the time and you will need ongoing maintenance dose vitamin D daily forever
But you will get better quality vitamin D if buy it yourself
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
Another member recommended this one recently
Vitamin D with k2
amazon.co.uk/Strength-Subli...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Great article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Low iron/ferritin
Are you vegetarian or vegan
Pre or post menopause
If no obvious cause for low iron
Have you had coeliac blood test done
Or are you already on strictly gluten free diet
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Good explanations of iron
What strength is your liquid levothyroxine
If you're taking levothyroxine as a liquid, 5ml can have 25 micrograms, 50 micrograms, 100 micrograms or 125micrograms in it.
Thank you. I have 10ml equivalent to 200mg. My thyroid results for last year were 5.4. my ferritin 16 and Vit D 16. Both on a scale of 30-150. My doctor thinks that's okay. I have only felt well when my thyroid is below 1. But I can't talk to him, he is on the defensive all the time and will not listen. He bamboozles me, blows air out of his lips , or says that's ok. That's not relevant, you don't need that or , I have the same. He has never prescribed anything for me. Everything I am on has been from other doctors.If I don't hear from the practice about changing my GP. Where do I stand.
It gets too much.
I would be totally lost without this Forum. Thanks to everyone here who has given such good advice.
Painful glands should not be dismissed. Difficulty in swallowing should not be dismissed.
Somehow, you need to get things checked out properly. A minimum of an ultrasound but should be more comprehensive than that.
I suggest you spend some time writing down your issues. Don't lie, but make sure you emphasis not just difficulty swallowing, but how that impacts you.
Review and revise. Keep it short but not at the expense of ignoring important issues.
Then go for another appointment and deliver what you have written (or hand a copy over). Just having gone through the process will likely have focussed on what matters to you. And ensured you don't miss things.
Thank you for your advice.I am at the moment complaining to the Ombudsman about this doctor who is obsessed with my B12. And has been for the last 5 years. I have not had a reply from the practice manager, and it's been over a week. I can never get an appointment for at least a month. Whereas my neighbours can get any appointment. I'm getting very fed up. This doctor seems no accountable for anything.
my recent blood tests said my TSH was 2.5 and my T4 was 14.5.
Saw you post this in a reply
This very likely means you are not on high enough dose levothyroxine.
On levothyroxine TSH should be around 1 or less and Ft4 at least 50-60% through range
Low vitamin levels also strongly suggest you are not on high enough dose levothyroxine
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