Endocrinologist: I'm female, mid 50s and have... - Thyroid UK

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Endocrinologist

RabbitMum_1965 profile image
11 Replies

I'm female, mid 50s and have osteoarthritis. I hope someone can answer a few queries.

Is it normal to get severe flare ups with osteoarthritis or does that point to rheumatoid arthritis?

Over the last 6 months, I've noticed that my body has been producing increased areas of bone e.g. right elbow and left sternoclavicular joint. The right side of sternoclavicular joint is also becoming pronounced but to a much lesser extent. I know I have calcium deposits in my brain.

Is it normal for this to happen so quickly? The lumps are painful. GP arranged xray and ultrasound on elbow and given diagnosis of tennis elbow. But pain still there after 4 months off sick (caught Covid which delayed things). I went to a private ultrasound guy who said that my elbow had 'degeneration all over ' and that the left SC joint had a large build up of calcium/bone.

Is a build up of calcium the same as a build up of bone?

The private sonographer said it was 'suggestive' of degenerative changes and that there is 'synovial thickening' at the SC joint.

I would like to know if this is all to do with hormones, which is why I now think I should see a private endocrinologist as my GP wouldn't even send me for an xray (which is why I went to a private sonographer). Does anyone know of a good one in Scotland or north England? Other history is complicated pregnacies (miscarriage, pre-eclampsia, prem low birth weight babies and was told I have 'sticky blood', which the GP also ignored).

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RabbitMum_1965
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SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

You have Hughes syndrome and autoimmune thyroid disease and possibly question over parathyroid levels

Are you currently on levothyroxine?

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

For parathyroid you need calcium, vitamin D and parathyroid levels tested TOGETHER

parathyroid.com/low-vitamin...

a low vitamin D cannot ever be the cause of high blood calcium. This fact is not debatable. Thus, if you have a low vitamin D and your calcium is above 10.0, then the high calcium in your blood must have come from somewhere else other than your diet (it came from your bones). Thus, if you have a low vitamin D, and a calcium level above 10.1, then you are almost guaranteed to have primary hyperparathyroidism and need surgery to remove the parathyroid tumor. A low vitamin D cannot ever be the cause of high blood calcium.

Recommend getting parathyroid, vitamin D and calcium tested and Download this app and add results

calciumpro.com

Thyroid

ALWAYS test thyroid levels early morning, ideally before 9am and if on levothyroxine, last dose 24 hours before test

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

RabbitMum_1965 profile image
RabbitMum_1965 in reply to SlowDragon

Apologies for the late reply. I've not been myself after a fall, which resulted in concussion. I don't think my B12 has ever been tested and Vit D was done maybe in 2020,along with parathyroid levels. I can't remember exactly - GP refused referral to endocrinologist, opting to ask for written advice only. I'm on 50 mg Levothyroxine, which the consultant said was fine and to NOT get parathyroid levels rechecked unless calcium was low. I think he even said not to get vit d levels checked. Calcium was checked in mid 2022 by A+E, when I sustained concussion. I probably will need to get private bloods done but will try another GP first.

SlowDragon profile image
SlowDragonAdministrator in reply to RabbitMum_1965

How long have you been on just 50mcg levothyroxine

This is only the standard STARTER dose

Typically dose is increased slowly upwards over first 12-18 months. Dose is increased in 25mcg steps upwards. Retesting thyroid, TSH, Ft4 and Ft3 6-8 weeks after each dose increase

ALWAYS test thyroid early morning and last dose levothyroxine 24 hours before test

ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually

Many (most?) thyroid patients need to supplement vitamin D and vitamin B complex daily. Some need separate B12 too, certainly initially.

Very common to have low iron/ferritin as well

Low vitamins are extremely common if left on inadequate dose levothyroxine

Low vitamin levels tend to lower TSH

SlowDragon profile image
SlowDragonAdministrator in reply to RabbitMum_1965

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...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

humanbean profile image
humanbean

Many people on this forum take vitamin D supplements because testing shows that many of us are deficient or very low in it. Low vitamin D can cause lots of pain in joints, so having a healthy level can reduce pain. It is important not to take too much though, because it can become toxic if levels become too high, so regular testing is important. So, while actively trying to raise a low level of vitamin D, get tested every 3 or 4 months.

Vitamin D is fat soluble, so take it with your fattiest meal of the day, and four hours away from any thyroid hormones (and possibly other medicines).

Once levels are optimal you would need to reduce dosage to find your maintenance dose to try and keep your vitamin D level optimal. Once you've achieved that, reduce testing to every six months.

Optimal levels of vitamin D are considered to be either 100 - 150 nmol/L or 125 nmol/L.

Personal anecdote : I keep my own vitamin D level as close to 100 nmol/L as I can, some others keep theirs at 150 nmol/L. You need to find your own preferred level.

Assuming your vitamin D level is low, to find a suitable dosage of supplement see this link :

grassrootshealth.net/projec...

Note that the US uses completely different units of measurement (ng/mL) that can't be directly compared to those used in the UK and the rest of the world, so take that into account when reading anything about vitamin D.

If you read an article written for a US audience you can convert from ng/mL to nmol/L or vice versa using this link :

grassrootshealth.net/?post_...

...

Taking Vitamin D will raise levels of calcium absorbed from the diet. It is important to try and encourage that calcium to be absorbed by bones and teeth, rather than end up lining your arteries or depositing in places where it isn't wanted.

The two things that help are Magnesium and Vitamin K2.

...

Magnesium testing is not reliable. Less than 1% of the body's magnesium is found in the blood stream. If it runs low in the blood it will be taken from other tissues and organs and put into the blood. So people can have good levels of Mg in the blood but be very deficient elsewhere.

What most people do is supplement magnesium and rely on the kidneys to excrete any excess. If you have failing kidneys then supplementing magnesium is not advisable - it would need to be done under the supervision of a doctor.

There are many forms of magnesium that can be supplemented but people need to choose one that suits them and their health problems, and avoid the ones that can't be absorbed very well :

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

pubmed.ncbi.nlm.nih.gov/291...

...

Vitamin K2 - SeasideSusie has written many replies to people on the subject of vitamin K2.

You can find all her replies here :

healthunlocked.com/user/Sea...

Or you can search the forum for vitamin K2.

AmberBee profile image
AmberBee in reply to humanbean

Am told that red blood cell magnesium is a better measure, I inject magnesium due to bowel tolerance problems with magnesium supplements, have found over the years it helps with sleep and chronic pain

humanbean profile image
humanbean in reply to AmberBee

I have read that (about red cell magnesium) several times before. I've never really been convinced though, sorry.

If you look at Table 2 in this link :

ncbi.nlm.nih.gov/pmc/articl...

it says that 0.3% of the body's magnesium is in the serum and 0.5% is in red blood cells, so I can't believe that either are really accurate, since the body steals magnesium from other sources e.g. bone, muscle, soft tissue, when there isn't enough in the blood. So the blood levels can look good when bone levels of magnesium are low, for example.

Edit : I do take magnesium and I agree it is wonderful stuff.

Batty1 profile image
Batty1

I have psoriatic arthritis and doctors that are not familiar with PSA always say I have osteoarthritis…. I believe osteoarthritis is a throwaway diagnosis because no matter what your pain is its always osteoarthritis even if you have history or other conditions that can cause different forms of arthritis. Delaying proper treatment for your condition can come with a lot of irreversible damage.

Do you have psoriasis or family history of psoriasis? I ask because PSA tends to show calcium buildup on tendons and bones.

Brightness14 profile image
Brightness14

Although I can't help with most of your problems I know that years before my thyroid problems I had my gallbladder out I was never overweight or had high cholesterol. I later found out that I had very low vitamin d levels.I have a good blood type O positive which is good for blood flow but I still take Hawthorn Berry and a Garlic Capsules everyday, perhaps these would help with you blood flow.

EebieJeebies profile image
EebieJeebies

joint, muscle and soft tissue pain have been my most prevalent symptom since Hashimotos diagnosis in my 30’s. I experience flare ups. We are a similar age and these issues have troubled me more than ever in the last few years. My nails are ridged, heberden nodes are painful, sharp stabbing pains through hand and feet joints, swelling around Achilles, neck spurs etc. I don’t feel I have got anywhere with Rheumy, it’s all ‘just osteo’. I’ve just started HRT to see if that helps 🙏

SlowDragon profile image
SlowDragonAdministrator

Does anyone know of a good one in Scotland or north England?

yes

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors

tukadmin@thyroiduk.org

There’s one on list in Edinburgh

May be others

Get full thyroid and vitamin testing done BEFORE considering booking any consultation

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