Has any experienced a red neck?

[Tessil23]

I have occasionally been getting red neck where my thyroid is located. I usually get it at night and it is sensitive to touch. I wonder if this is related to my hypothyroidism. My thyroid levels are within range but my parathyroid and calcium have been high but since no nodule was presented on my ultrasound my endo told me that my high calcium is possibly genetics. I also have high red blood cell and high hemoglobin but have been told it’s fine because it’s not super elevated for them to think it’s polycythemia.

[Yeswithasmile]

Hi Tessil23

Sorry you are suffering 😞

I have not experience of the redness but I wouldn’t be surprised if it were thyroid related. It does seem to have a long list of possible symptoms. Others maybe able to assist regarding this.

I was wondering about your calcium levels firstly. What they were and have you had previous calcium tests? I had thought that raised was raised and there really isn’t any other reason for raised calcium? Obviously I’m not a doctor and this is just what I have read. I believe that it can affect your kidney levels too? Do you have any blood test results you could post that may help members to comment?

Lastly my mum has polycythemia. Do you know how raised your levels are? Mine were higher last test but also not of concern. The treatment isn’t great for this so if yours are low enough to avoid then it’s a good thing. Again, if you have any test results then members maybe able to comment and there is a forum for these disorders on HU that you may find useful too if you haven’t already discovered them?

x.

[Tessil23 in reply to Yeswithasmile]

Hi thank you for the response!

After my synthroid wasn’t doing much and was dealing with joint and hip pain from a labrum tear my provider requested some panels and told me that my calcium was slightly elevated and I may have gout I was then referred back to my endo but she didn’t think much of it because my parathyroid levels were within range but they kept bouncing around when it finally came elevated I was referred to get an ultrasound which didn’t find any nodules my endocrinologist then referred me to the geneticist because she thinks it was FHH and not hyperparathyroidism. My FHH test hasn’t came back and my calcium and parathyroid is still elevated. My doctor had requested a CBC due to easy bruising and my numbers came back slightly elevated and nothing really came from that my doctor told me it could be from the elevation.

- Just a side note I’m a service member and get seen with naval medicine the doctors aren’t the greatest.

I’m currently being seen with a neurologist and have a CT scan scheduled because I have been dealing with internal tremors at night mainly and cluster headaches that last weeks sometimes I was told to look into MS by a friend since.

Blood work

[Tessil23 in reply to Yeswithasmile]

This is my elevated PTH

PTH LEVELS

[Tessil23 in reply to Yeswithasmile]

This calcium test was on the lower side I think the highest was 11.4

My calcium levels

[Yeswithasmile]

How much synthroid do you take at the moment?

Have you got any iron results?

[Tessil23 in reply to Yeswithasmile]

I take 50mg and yes I’ve had my iron checked and it’s all normal

[Yeswithasmile]

You need to post the results. You maybe told they are in range but that doesn’t mean they are good/optimal. Also there’s no thyroid results. Tsh, t4 and maybe t3 if you have it.

Without going any further I would imagine you are undermedicated. There are lots of well read/informed/experienced people on here and hopefully they’ll come and help but 50mcg is a low dose and symptoms of being undermedicated present as hypothyroid symptoms. You probably know these can be aches and pains, anxiety, heart palpatations..... there are many and everybody experiences do vary. I get severe joint pain, brain fog, tiredness, weight gain amongst others. But these are my main ones.

You do seem to have comprehensive blood test results so I wonder if you have relevant thyroid tests on there?

[Tessil23]

This is my most recent result and my endocrinologist said it all looked good even thought my PTH is still slightly elevated

Recent TSH, T4, and PTH

[SlowDragon Administrator in reply to Tessil23]

On levothyroxine TSH should ALWAYS be under 2

When adequately treated, TSH will often be well below one.

Request 25mcg dose increase in levothyroxine and bloods retested 6-8 weeks after each dose increase

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Essential to test vitamin D, folate, ferritin and B12

Being under medicated frequently lowers vitamin levels

Headaches are classic hypothyroid symptom

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

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

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

[e-mail]

[Yeswithasmile]

So you are undermedicated with your synthroid. Your t4 is 31% through the range and to feel better most people need that much higher.

As I mentioned, I am not a doctor, but if these were my results I would be asking for an increase in my t4 medication and I think I’d be querying the parathyroid/glucose and haematology results. I would hope that the clever bods can take a look on here and give there thought on whether it’s a separate issue to thyroid or if there is a possibility of it being connected and an increase of t4 may help with that issue or not.

If your hypothyroidism is Hashimotos (meaning you have antibodies) it is autoimmune and it is fairly common to have more than one autoimmune condition.

However, for now, from my limited knowledge I would definitely asking for a raise in synthroid aiming to reduce your tsh to near the bottom end of the range. I would be hopeful that will really help how you feel now.

I hope this isnt all too confusing??! When you feel yuk everything’s hard to deal with. I am really hope my replies are making you grasp what you need to do to start with? X

[Tessil23 in reply to Yeswithasmile]

Wow Im so used to hearing you’re fine you’re within range I will definitely be looking into it thank you

[Yeswithasmile in reply to Tessil23]

You are not alone. We have ALL been there 🙄. This forum is a great way to gaining knowledge on how to start feeling better.

The others on here are much better at explaining things. Hopefully Slowdragon for one will come on with her post with advice to private blood tests etc and timings etc. I can’t link her with the app I’m afraid. x.

[SlowDragon Administrator in reply to Tessil23]

guidelines on dose levothyroxine by weight

Even if we frequently 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 eventually 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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines. Some people need more .....some less

healthunlocked.com/thyroidu...

[Partner20]

You mention the high RBC and haemoglobin. It is certainly true that this can be a genetic condition, one visual manifestation being reddened skin on the face and neck areas. However, I note that your haematocrit is right on the border at the top of the range. My partner's haematologist considers this to be the critical reading, and, as he has been diagnosed with polycythemia, with consistent high haemoglobin and RBC, he has a haemitocrit target of 42. If he goes above this, even by a percentage point or two, he is called in for treatment. I would think that your three high blood count levels would certainly be a cause for further, more specific investigation. Incidentally, my partner also has hypothyroidism and secondary hyperparathyroidism. Looking at your thyroid results, as others have said, you are undermedicated, and would definitely benefit from an increase in dosage.

[Tessil23 in reply to Partner20]

Wow that k you for sharing that information I have asked about that since I do get itchy burning skin after I shower and have had changes with my vision I have a lot of floaters and visual disturbances like peripheral hallucinations and constant headaches that I’m currently being sent to a neurologist for.. I was referred to a hematologist and only checked for coagulation because of my bruising but wasn’t concerned about my levels

[Partner20 in reply to Tessil23]

Hi! Hopefully those RBC, haemoglobin and haemitocrit levels of yours will be checked again in future. You mention headaches, which again raises the possibility of polycythemia, but hopefully the neurologist will prove helpful and informative in that respect. Good luck with your next appointments, and hope you find some answers soon.🙂🤞🙂

[Tessil23 in reply to Partner20]

I’m so thankful for finding this website I actually just upped my medication a bit and just got a CBC redone we shall see where my levels are.

[Partner20 in reply to Tessil23]

🙂👍🙂

[mstp]

I had this before we had a shower when I used to wash my hair in the bath!