Stuck!!

[Denise37]

Hi I was diagnosed hypothyroid in may 2018 so just a few short months but I've been declining in health from the age of 30 ( I'm now 37) I've always been fit and healthy an active then 30 hit me with extreme tiredness , anxiety , weight gain, an many other symptoms 4 years ago it got bad enough I went to a doctor ( cos me and doctors have never really been friends) I thought I was loosing my mind I literally thought I had dementia , my memory, concentration, speech ,aswell as physical symptoms such as hair falling out , always cold, aches and pains etc (many more) the doctor said I was depressed an sent me on my way with anti-depressants an told me too loose weight ,no matter what I try I can not loose weight I just gain, even though I have no appetite and eat healthy , exercise is now a major problem cos I am in constant pain , my neck my arms, my legs , my knees ,my ankles ( I have vitamin d dificency too) my back ,my fingers, my toes , my wrists , my hand movements are constricted my strength is limited sometimes ( sometimes struggle to carry a cup) my body's numb sometimes on fire tingling , some times like I've been lay in snow for hours I go through a whole load of different sensations none particularly pleasant , but I am finding it hard to cope about now with this toothache like pain in my bones , aching and throbbing and nothing makes it go away it's constant!! I have awful headaches that start at the top of my neck up my skull that are worse with head movements , I can't sleep because of the pain I'm constantly waking when I do eventually fall asleep, ( usually cried myself too sleep) I get over one illness to contract another maybe a day or 2 after there's no reprise and scariest of all to me right now is my mood ! I just don't see the point in my existence what possible reason would god want me to exist in this world of pain and isolation, I wear a mask to hide my turmoil to my family suicidal thoughts consume me it's all I think about day & night .Doctors are useless they are still adjusting my levothyroxine to get the correct dose .has anyone ever come back from these hypo related problem

[SeasideSusie Remembering]

Denise

It sounds like you're undermedicate. Can you please post your latest test results, with their reference ranges? If you don't have them just pop along to your surgery and ask for a print out (don't accept verbal or handwritten results, mistakes can be made, make sure it's a print out and includes the reference ranges).

Ideally we need to see:

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

As you have Vit D deficiency, what are you prescribed and is your level being monitored?

[Denise37 in reply to SeasideSusie]

I know my doctor only checks TSH and vitamin D ( cause of my chronic pain) they have never gave me the results , I'm prescribed cholecalciferol I'm not sure if they've changed it as the doctor just rang me to tell me my last results for thyroid & vitamin d are really low and has left me a new prescription at the surgery to pick up .

[SeasideSusie Remembering in reply to Denise37]

Denise

You need to know your results, ask for a print out as advised above.

TSH is not an indicator of thyroid health or whether you are optimally medicated, it's not a thyroid hormone, FT4 and FT3 are the thyroid hormones.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take enough replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

So to know if you are on the right dose of Levo, you need FT4 and FT3 testing.

Often we can't get these done with our GP so hundreds of us here resort to private testing with one of the recommended labs - Medichecks or Blue Horizon. Both do home fingerprick tests (or venous blood draw at extra cost).

It would be a good idea to do a test bundle that includes all those I listed above.

Medichecks Thyroid UltraVit medichecks.com/thyroid-func... and use code MED99 before the end of October for 20% discount

or

bluehorizonmedicals.co.uk/t... - occasionally there is a pop up discount

[Denise37 in reply to SeasideSusie]

Thankyou I definitely need to get this done next pay day ! I'll ask for a print out when I pick up my new prescription

[Gryphon1 in reply to Denise37]

How can people afford these tests and supplements,vits etc. I just have enough for basic food and rent. I am also agoraphobic so cant get to doctors for tests or results. I have all same symptons and pa but when I ask on phone get nowhere with gp. I feel I cant go on much longer also in this isolation I have no one to help me and it is so hard to read on here and know I cant even afford to sort it on my own.

[Denise37 in reply to Gryphon1]

Gryphon to be honest I can barely afford to eat for the month let alone anything else but I am determined to find away to get these tests to take control of my own health and I am so sorry your experiencing all these horrible symptoms it's a very lonely place , but you've come to the right place ... the advice an help here is amazing ! And if you ever need to talk I'm only a message away .

[Gryphon1 in reply to Denise37]

Thank you for your reply. I know the advice on here is good but I really cant afford the suggestions given and my doctors is no help at all. I live alone like I said with agoraphobia and feel like I am slowly dying and I wont be able to get help in time.Your orginal post was so how I feel I cried. I see you have at least got to doctors and more medication. I hope it helps you. Good luck. Sorry not replied before very ill and down. Thanks again.

[Denise37 in reply to SeasideSusie]

I visited my doctor today who told me my TSH is 227 (0.46-5.0) range

And my vitamin d is 5 ( 20-50 ng/ml)

she's just upped my levothyroxine again to 125 and to be retested in a few weeks

[SeasideSusie Remembering in reply to Denise37]

Denise

You must be feeling dreadful with a TSH that high.

What was your TSH last time?

You really do need the full bundle of tests I mentioned above.

And my vitamin d is 5 ( 20-50 ng/ml)

What's she doing about your Vit D deficiency? Loading doses?

[Denise37 in reply to SeasideSusie]

She put me on another 15 day course of vitamin D ,then 1 a month there after , she Said my TSH was 233 last time and the test before that 244 so I'm gradually getting there but it's literally ridiculous how I feel I feel worse on the Levothyroxine than I ever did before 🤢 I visited her today because my daughter booked me the appointment as the past 3 days I've been in awful pain in my left arm, left side of my neck, shoulder and shoulder blade with a sore chest , barely examined me an said it was muscle pain sent me on my way with painkillers I already had at home ,she said as soon as my vitamin d is up I will be pain free ! I left bewildered .. 🤷🏻‍♀️

[SeasideSusie Remembering in reply to Denise37]

Denise

How much D3 are you prescribed for the 15 day course and how much after that?

What brand of Levo are you taking?

[Denise37 in reply to SeasideSusie]

I'm prescribed colecalciferol 20,00 units once a day for 15 days then 1 tablet once a month , and I've just noticed my levothyroxine is 2 different brands 100mg of actavis and 25 wockhardt (the 25g are the new pack I picked up today, can I ask u seaside susie do u get the pain with ur vitamin d been so low ?

[SeasideSusie Remembering in reply to Denise37]

Denise

20,00 units once a day for 15 days

Can you please clarify - is that 20,000iu or 2,000iu daily

If it's 20,000 units once a day for 15 days

then that's the loading doses then, they should total 300,000iu. Although your GP isn't following normal NICE Clinical Knowledge Summary, it usually takes a few weeks to total 300,000iu.

If it's 2,000iu units once a day for 15 days

then that's not enough, you would need 4,000iu daily for 10 weeks (280,000iu).

then 1 tablet once a month

20,000/30 = 666iu

666iu daily isn't enough for a maintenance dose.

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 40-60ng/ml (100-150nmol/L). Once you've reached this level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

So you need to know what your new level is after the loading doses then we can work out what the next step is if you haven't reached the recommended level.

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

can I ask u seaside susie do u get the pain with ur vitamin d been so low ?

My Vit D isn't low. I used to be severely deficient, which I discovered and treated myself - 15nmol/L (which is 6ng/ml) but I didn't get pain. I remember that my ankles were extremely stiff when getting up in the morning, it was like they were welded and I could only shuffle along, but they did loosen up after a while. My level is now at that recommended - 100-150nmol/L, but I do find at the lower end of the range I get bone pain in my shins so I keep it at the upper end of the recommended range.

I've just noticed my levothyroxine is 2 different brands 100mg of actavis and 25 wockhardt (the 25g are the new pack I picked up today

It's best if you can stick to the same brand, although they all don't do 25mcg. Look out for any side effects, or not feeling so well, when you add in the new one, and if you experience any then ask for your normal brand and you may need to cut a higher dose tablet down to get what you need, or alternate dose to average out the dose you need.

[Huddy1234]

Denise, try and get a referral to a Endocrinologist as they seem to be far more helpful and caring than your average GP....... mine was useless too.

I'm also going through the adjustments on levo to try and find the correct dose so know how frustrating it is - I'm extremely sensitive to increase so in a bit of a catch 22 situation!!

Have extreme tiredness/anxiety/low mood.

This site gives so much helpful information so you've come to the right place.

xx

[Denise37 in reply to Huddy1234]

This has literally over taken my life , my gp shrugs it off but this is my life , I have children , grandchildren , I can't work nobody would employ me in this state I struggle financially , physically , mentally and don't even start me on emotions I have zero control , do I just ask my doctor to refer me to a endo I mean can I even do that ?. Because trust me I have never been ill in my life only time my doctors had seen me before this was to confirm pregnancies , the fact I'm seeking help from a doctor shows my despair

[Nanaedake in reply to Denise37]

You will get better again once your thyroid hormone is balanced and your vitamin levels good. You need to have a blood test every 6 weeks and increase thyroid medication until your TSH is around 1. You must get blood test results printed and ensure they include the lab ranges. It might be possible to register online to access your blood test results. Ask at your GP reception if in the UK and don't be deterred.

[Huddy1234 in reply to Denise37]

Morning Denise,

Yes, demand your doctor refers you - my gp was useless too and I asked for someone that could help me, a specialist in this field.

I’m lucky that I have private healthcare with work so I have got referrref and am using that but the NHS id also available.

Make an appointment today and demand this. You cannot carry on being left to live like this....... x

[Silentsparrow]

Hi Denise.

Being your own best health advocate is paramount to being optimally treated for this awful illness. In my own experiences GPs and endocrinologists barely touch the surface when it comes to treatment, opting for the path of least resistance and sending you on your way. It took me seven years of painfully debilitating symptoms before I landed in hospital with 'Profound Hypothyroidism' TSH of 143, only then did anyone take me moderately seriously. Yes dosing with thyroxine T4 will level out your blood panels on paper....but Hypothyroidism/ Hashimotos is so much more than this...It is a full body disease, which needs an invested and caring practitioner to work with you to guide you back to optimal health. In my experience, the simple fact is that GPs don't have a clue, they follow a basic diagnostic/treatment protocol and that's where it ends. I have at long last found an integrative/functional doctor who specialises in Thyroid disease and hormonal imbalance, and am now starting at square one again. He is optimistic that his new recommended treatment will yield positive results, but also promises that he will keep searching should he be wrong. Please be smart, find someone who listens, rather than someone who only cares about lab results....be kind and generous to yourself, you deserve to be well.

[Hidden]

Hi dear,

I suffered the same symptoms as you described in your text.i went to my GP several times for nearly a year they could see anything .As I keep on insisting going there ,luckily two months back they took my bloods done discovered I have under active thyroid and they put me on 25dose leno but after taking that for three weeks,I still see no difference and I went back there they increased my dose to 50 I also took that for two weeks no improvement.i went on YouTube to inform myself about this thyroid and I cane across one doctor from USA ‘YouTube video and watched that I understand that under active thyroid could leads to all these symptoms and best medication for it is to help yourself with good vitamin supplements like selenium,calcium magnesium ,iron and ashwagandha.after watching his video,I order all these vitamins from amazon and started taking them,trust me love within 2days,all my sleep disorder,tiredness,depression and mussels ache has gone am now back to normal and I feel very energetic.I thing some times we lacked vitamins in our system that’s what caused us all this problem though am still taking my thyroid medication but all I can say is this vitamins helps me get through all what I have been through

[Hidden]

I struggled with emotional glitches for almost 2 years and the body pains are off the chart I also think this lead me to have mental meltdowns I believe at least for me I could not handle Synthyroid and Cytomel I'm currently on Armour Thyroid 2 grains and my mood is 100% better sadly my body pain still exist.....sigh.

[Denise37 in reply to Hidden]

I'm so sorry your still in pain