Is this normal?: Hi everyone, I am looking for... - Thyroid UK

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Is this normal?

Icantadulttoday profile image

Hi everyone,

I am looking for some help and perhaps a touch of reassurance that what i am experiencing is normal. I am new to all this and very overwhelmed and the info from doctors is well, erm lacking is probably the polite way to put it.

To give some context I have been poorly for around 2 years and I have recently (finally) been diagnosed with partial empty sella, hypopituitarism which has caused adrenal insufficiency and hypothyroidism and the medication I have been given is Hydrocortisone and Levothyroxine which I have been taking since diagnosis.

The majority of my symptoms have gone with the meds which is exciting, but the odd one pops up from time to tome to give me a reminder. That I can live with. The part that has confused me and struggling with is how I have been feeling these last 4 weeks....

From my rib cage down to my hip bone level, I am experiencing a bruised, dull ache type pain with shooting stabbing pains and if I stretch out my insides feel like they are tearing and burning 🙁 I feel incredibly swollen. In addition to this my breasts are extremely tender and nipples very sore and I can not currently wear a bra at the moment as it hurts too much. My breasts are larger than normal and I have had to buy the cup size up in my bras but it almost like they feel and are swollen. I have also had paid in my legs and my back pain is much worse than normal (I have medication for the last 7 years for my back - Bunov Transdermal patches 10mg to combat this). I went to see my sports masseur who massaged my legs for around 3 minutes and then refused to continue as they felt inflamed. I have been wearing loose fitting trousers as my jeans are unbearable to wear. Is this a side effect? Or even a symptom? I can't seem to find anything online to help and the doctors want to "see how I go".

I have put on around 10kg in total, and I expected to put weight on from what I had read and seen in the forums but the above makes me feel like a balloon ready to pop rather than the usual putting on of weight.

Anyone else experienced this? Any tips to help the pain?

Thank you in advance.

23 Replies

Welcome to the forum

I'm so sorry you are feeling so awful. The reason the info from doctors is so lacking, as you gracefully put it, is that they simply don't know any more: thyroid training is minimal for GPs and they learn zero about nutrition. Instead, they put you on a "starter" dose of levo and leave you to get on with it - which is why this forum is so useful for so many of us.

First step, if you don't already have them, get hold of your last blood test results, That way you will see what has actually been tested (probably very little of use) and exactly how you did (probably, not so well).

Second, if the last tests were more than 2 months ago, ask for some more. Ideally you will get FULL testing - and that means TSH, free T4, free T3, thyroid antibodies (unless these have been done before and come back high) and key nutrients - ferritin, folate, vit D and B12. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK, but if the GP will only do TSH (sigh) consider getting private tests done. You will see LOTS of posts here about private testing. SlowDragon does a good summary of the available tests and there are discounts on the main Thyroid UK site.

Always always have a fasting early morning ( before 9am) blood test (when TSH is highest) and leave 24 hours from your previous dose of levo (take the next dose straight afterwards) and in the meantime, to get the best from your levo, always take it on an empty stomach, just with water, an hour before/two hours after other food or drink and well away from other meds. Please always get your actual blood results after a test - and post the results here (along with the related lab ranges, as these vary from lab to lab) and post them here and the lovely people will help you to understand them. Don't rely on a receptionist telling you they're "in range" or "normal" or reading them over the phone - you want the actual written results and are legally entitled to them [you don't have to give a reason but it's usually easiest to say "for my records" or register for on-line access]

As for your actual symptoms - yes they may well be thyroid-related [thyroid hormones often affect other hormones] - but if not, let's get your thyroid situation tip-top (or at least improved!) and then sort out everything else :)

Good luck x

This is so helpful thank you so much! I really appreciated you taking the time to reply like you have. I may have had a little happy cry hahahaha.

All I know is on my "patient access" app it says

Serum free T4 results

March - 16pmol/L

June - 47pmol/L

July - 10pmol/L

July - 5.7pmol/L - Given Levothyroxine 100mg

August - Told it was back to "normal range"

Serum TSH level 0.01mU/L on the 30th June

So no idea what that means or if it is helpful.

So it definitely looks like I need to get a lot more information. Thank you so much for being so detailed, especially with all the key nutrients. I am guessing this means I will be lacking in them and need to take supplements?

SlowDragon profile image
SlowDragonAdministrator in reply to Icantadulttoday

Always test vitamins before starting any supplements

Optimal vitamin levels can help improve conversion of Ft4 (levothyroxine) into Ft3 (active hormone)

Approx how much do you weigh in kilo

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 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...

Many people find different brands of levothyroxine are not interchangeable

Once you find brand that suits you best, always get same brand at each prescription

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Are you always taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Essential to regularly retest vitamin D, folate, ferritin and B12 when on levothyroxine

Being under medicated for thyroid results in LOW stomach acid, leading to poor nutrient absorption and low vitamins as direct result

As you are also on steroid replacement, it’s a careful balancing act as levothyroxine dose is increased, you may need hydrocortisone adjusted

Presumably you have a thyroid, adrenal and pituitary specialist endocrinologist?

If not….you need one

Roughly where in U.K. are you

Hey thank you for responding to me.

I am on 100mg of levothyroxine at the moment and I take it 1 hour before my other medication (I should take my Hydrocortisone as soon as I wake up but having to leave it for 1 hour) and I don't have anything to eat or drink (Apart from water for that hour too). I don't actually know why I do this come to think of it. What would happen if I had the levothyroxine with food etc?

Yes I have an Endocrinologist (Private) that is helpful but the appointments are few and far between as we need to "wait and see" apparently with me being on both meds. I am sure that is right but my patience is wearing thin.

I had no idea about the testing for vitamin D, folate, ferritin and B12, they hadn't mentioned anything

I live in North Yorkshire

Thanks so much for your help

SlowDragon profile image
SlowDragonAdministrator in reply to Icantadulttoday

Suggest you move taking levothyroxine to bedtime (or middle of night) , then you can take hydrocortisone as soon as you wake

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

Many members find taking at bedtime, of in middle of night is more effective

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 9am Monday morning, delay Saturday evening dose levothyroxine until 9am Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Suggest you get FULL thyroid and vitamin testing done now

See where vitamins are

You will need to retest thyroid (and vitamins if low) 2-3 months after changing levothyroxine dose time to bedtime/middle of night

Again this is so incredibly helpful. Thank you so much

SlowDragon profile image
SlowDragonAdministrator

Sore tender breasts could be due to prolactin

Has GP or endocrinologist tested prolactin levels

Do you have recent thyroid and vitamin test results you can add?

You are legally entitled to printed copies of 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

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) or if under medicated

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...

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.co/tests/thyroid-test

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

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...

WOW this is a lot of info. Thank you so much.

All I know is on my "patient access" app it says

Serum free T4 results

March - 16pmol/L

June - 47pmol/L

July - 10pmol/L

July - 5.7pmol/L - Given Levothyroxine 100mg

August - Told it was back to "normal range"

Serum TSH level 0.01mU/L on the 30th June

So no idea what that means or if it is helpful

SlowDragon profile image
SlowDragonAdministrator in reply to Icantadulttoday

Sorry we always need the ranges (figures in brackets after each result)

Different labs have different ranges

Always test early morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test to get most consistent results

Just testing TSH and Ft4 is completely inadequate

I will get on this. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Icantadulttoday

See if GP will test prolactin and vitamins

NHS won’t test Ft3 in anything but exceptional circumstances

Vast majority U.K. patients have to test TSH, Ft4 and Ft3 together privately

If GP will test vitamins

Cheapest option for just TSH, Ft4 and Ft3 is Monitor My Health (NHS private service)

shaws profile image
shawsAdministrator

Welcome to our forum but other members who've had a similar experience to yourself will respond when they read your post.

No I am only taking Hydrocortisone and levothyroxine

Not sure of your age.... pre menopausal I'm guessing. To me sore breasts can point to low progesterone. I used Wellsprings Progesterone Cream for many years, pre menopausal and during menopause, which helped me enormously.wellsprings-health.com/page...

Click on the top tab Hormone Learning.

However, you obviously do have a thyroid problem, lots of really informed info on here

Thank you, I will take a look at this. I am 34 however my mum, Auntie and nana all went through menopause in their late 30's so this is definitely something to consider. thanks

I also have hypopituitarism due to removal of a pituitary tumour so I'm also on Hydrocortisone & Levothyroxine. Others have helped you with your thyroid meds, with hypopituitarism you need T4 tested, which you are, as your pituitary won't make TSH, T4 needs to be in the mid teens to be effective for us. I'm one that takes my Levo in the middle of the night when I get up to wee. How much Hydrocortisone are you on? I'm wondering whether your weight gain is due to being on too much HC? If you are on Facebook then join the UK Addison's & AI info & support group, you will gain a lot fo knowledge on there as well. Have you ever had a day curve done to see if you're on the correct amount of HC? Sadly GP's know even less about Adrenal Insufficiency than they do about thyroid issues.

Ahhh this is really good to know thank you so much.

I am currently trying out hydrocortisone 15mg in the morning and 10mg around 4.30-5ish this seems to be the best way so far.

I have previously done, 10 and 10 then I tried 10, 5 and 5. That moved to 10, 10 and 5. Taking 20mg in total for the day just wasn't enough now i'm on 25mg through the day most of my symptoms have gone and I can actually do a few bits now (not a lot) but I can cook with breaks and just about get around a supermarket now which is good :)

I am really disappointed my endocrinologist hasn't mentioned about taking the Levothyroxine before bed or in the middle of the night. I am going to try this as I bet I will see a major difference. Do I need to take it at the same time every night though?

I am still on "wait and see" before they will do the 'Day Curve" with me. I am a private patient but they seem to not want to do this yet which baffles me slightly.

Thank you as well for the FB group signpost

Sadly many Endo's just want to prescribe rather than suggesting the best times to take meds.

Regarding HC, it only lasts in the body for between 4-6 hours regardless of how much you take, so 20mgs will be used up in the same times as just 2.5mgs, so it is best to split it into at least 3 doses or more a day to get greater cover. I take around 30mgs a day but split it into 5 or 6 doses including during the night. Someone without adrenal issues will start to make cortisol around 3-4am so it's at it's highest point first thing in the morning, as we don't we have to take HC for this, so it's advised that we take it at least 30mins before we get out of bed. then split the rest of the doses into 4-6 hours through the day to get better cover. We do all vary so we have to find what works best for us. Sometimes when we take too big a dose it can cause too much cortisol to be in the body & so we gain weight, cortisol reaches it's peak around 90 mins after taking it & then slowly comes down, I metabolise fast so need to take it every 3-4 hours during the day, I have to increase it if I am doing more than usual too. Have you been given an emergency injection kit of HC? You need one, you also should be wearing a medical alert bracelet stating that you are steroid dependent & have adrenal insufficiency. If you ever need to call for an ambulance you need to state Adrenal Insufficiency so that you get high priority, people have died from not getting the correct treatment quick enough. The chart shows how the body reacts to high doses of HC. Happy to help more if I can.

Description of high & low cortisol

I am so grateful for all of your help. I feel like I have been banging my head against a brick wall most of the time and the lack of any help or detail is just like pulling teeth.

I have the injection pack and I sorted a medical bracelet. I have left an info pack at all my families house and in both cars for the emergency services and all my friends and family know what to say if an ambulance is needed. I took it upon myself to do that though rather than it being advised or even spoken about with medical professionals.

This is really interesting what you say about times of day and frequency. I was told to take Hydrocortisone in the morning before 10am. Around Lunch time and between 4 and 6pm. But if I wanted to do 2 doses which apparently most people prefer then I have to take the lunch time slot out. He said If I miss a tablet and it is after 6pm I shouldn't then take it and I should wait until the next day (He did say not to make a habit of missing it but it doesn't harm me the odd time it happens), so I have been religious making sure I take it. Please could I ask what sort of times you take yours? Do you have set times? I am guessing you learnt this through doing a day curve? I am going to push for this.

Sorry for the 101 questions but when you say "I have to increase it if I am doing more than usual too" What do you mean by that? I have been instructed only to increase when I have a cold, infection etc and been given lots of helpful scenarios. However day to day life wise trying to get back on my feet seems to be a huge blocker for me. As an example... My partner drove me 1 hour to my mums house, we did nothing but eat, watch TV and just chit chat, play with the little doggy, 2 family members visited, I felt fine but I was much more mentally and socially stimulated than usual as I have not done this in 12 months. The next day he drove me home. That evening and for 2 days after I felt awful and spent most of my time in bed. Is this an occasion where I would potentially need to increase my amount do you think? (Obviously whilst I am getting back on my feet).

It is hard as I don't know what symptom relates to what. Is it my cortisol levels? Is it my thyroid? Is it my pituitary gland that is now not producing a different hormone that we have not yet tested for yet. Even though I am private everything is just so slow and there doesn't seem to be anyone you can pick up the phone to to ask a quick question or check something :( Sorry that is me ranting now hahaha.

Thank you again :)

Oh my goodness get rid of that Endo!!!! Most people don't take their HC twice a day & of you miss a dose you need to take more your body isn't making it to replace the lost dose! It will do you harm by missing a dose, people can easily go into adrenal crisis if they miss a dose, he probably thinks that if you take it after 6pm you won't sleep, this is an out of date statement with no empirical evidence to back it up. HC needs to be taken BEFORE you get out of bed, it's like expecting the car to start with no petrol in it! I didn't have the support of a good Endo so had to research & learn myself what was best for me. I joined the forums & gained more knowledge from people on there who lived with the condition, I also went to a couple of open days held by Prof Peter Hindmarsh who is a paediatric Endo but has done a lot of research & what he said made sense to me, I'm a retired nurse so interested in knowing as much as I can. cahisus.co.uk. So I now take my HC like this: 1.25mgs HC (guesstimate - ie a chip of 2.5mgs) at 3-4 am to kick start my body; 10mgs at 7am; 5mgs at 11am & 2pm; 2.5mgs at either 5 or 6pm depending on how I am feeling; 2.5mgs qt 22.45pm. I metabolise quickly so drop down low so need to take it like this. When I did have a day curve it was found that I wasn't over replaced & in fact could probably do with taking more. Lots of things can affect our levels including good emotion as well as bad, so how you felt after those two days were due to doing more. We often find that if we do a lot on e day we need a couple of days to recover. This Dutch brochure is one of the best at explaining all about it, including the need to take extra HC. adrenals.eu/wp-content/uplo...

You have become my favourite person ever!

So if you take the HC at 3-4am what time do you take the levothyroxine?

I am guessing that has long as it is at least 90 minutes from my last HC tablet I can take the Levothyroxine as I go to bed? Then start with the HC like you at 4am and start spacing my dose? This is fascinating and so helpful. i have not smiled like this in months!

😃

LOL! As it's such a tiny dose of HC I take my levo at the same time. x

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