New to this - waiting time for hospital appoint... - Thyroid UK

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New to this - waiting time for hospital appointment

Jill35 profile image
15 Replies

I was diagnosed with an under active thyroid gland 12 days ago. Put straight on 125mg levothyroxine and given further tests and referred to see the Endocrinologist 2 days later. Does anyone have any idea of how long I will need to wait for an appointment? Dr was unsure and really struggling with muscle cramps and hand and feet pain.

Any idea when you will start to feel relief from symptoms from when you start taking tablets. tia

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Jill35
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15 Replies
Trixie33 profile image
Trixie33

About three months for me from first referral.

puncturedbicycle profile image
puncturedbicycle

Blimey, 125 seems a lot for a starting dose. I wonder if you had a very high tsh. Best to get a printout of your results so you can keep track over time.

It may be good news that your gp has got you on a good dose of meds straight away (they've responded to your blood test results), but if you find yourself feeling odd it may be that this is too much too soon and there's no harm in starting on less (50 or 75) and building the dose gradually. Of course being in need of thyroid hormone you may feel fine on this dose.

Some of my symptoms got better quite quickly, particularly the feeling of being cold all the time. Others took longer. This affects everyone very differently and you may find you feel much better on the right dose. It can take six weeks for the meds to level off, so give yourself time to acclimatise.

Would be good to get your vit d tested. That was what caused my sore hands. And my sore/numb feet got better when I started b12 injections.

Jill35 profile image
Jill35 in reply topuncturedbicycle

Thanks I will ask about that.

radd profile image
radd

Jill,

Welcome to our forum,

125mcg Levo is quite a high initial dose and will take about a week to be absorbed before it starts working but up to 6 weeks to saturate the body, which will only tolerate small increases at any one time.

Your doctor should retest your thyroid hormone levels after 6 weeks and adjust the dose according to results. Leave 24 hours between last dose and blood draw and try to have the blood draw early in the morning when TSH is highest.

It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

Depending on how long your hypothyroidism has remained undiagnosed, your symptoms may continue for a while and can lag behind good biochemistry by 6-8 weeks. The goal of Levothyroxine is to restore the patient to euthyroid status and for most that means TSH just above or below 1.0.

People with thyroid issues often have vitamin deficiencies of those required for for good thyroid hormone synthesis. Ask your GP to test Vit B12, folate, ferritin, Vit D and post results complete with ranges (numbers in brackets) for members to comment.

Jill35 profile image
Jill35 in reply toradd

The Dr had done a range of bloods and everything was in normal range apart from blood clotting which was slightly low and Thyroid which he said was through the floor. Re-tested along with immune test then got referred to hospital not had results explained will go to the Drs and see if I can get a print out. The Dr did say that he would normally start off lower but as I was so low wanted to start me off on a higher dose

radd profile image
radd in reply toJill35

Jill,

I was started on 100mcg Levo with a TSH of 45.2 five years ago. It made me very dizzy and I felt as if the ground was moving for several months. I am sorry to hear of your muscle cramps.

You are legally allowed a copy of your test results and they are handy to keep for further reference at a later date.

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Accessing your medical records

thyroiduk.org.uk/tuk/NHS_In...

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You have a right to see your medical records under the Data Protection Act 1998. Guidance on The Data Protection Act 1998 can be found at:

ico.org.uk/for-the-public/p...

mistydog profile image
mistydog in reply toJill35

Jill - you need to learn not to accept that bloods are normal and get copies of your results. Just being within range and therefore not being picked up by the automatic computer screening that looks at ranges and even if you are right at the very bottom of the range or right at the very top says normal. Learn to question your doctor now, because it will stand you in good stead in the future.

Plus, what they said, 125 is a high starting dose.

Jill35 profile image
Jill35 in reply toradd

Ok here are the results from the Drs - In all honesty as I am new to this I can't make head nor tail of them.

TSH (0.35-5.00) *44.70

Free T4 (9.0-21.0) *<5.0

Thyroid Perox ABs * >1000.0 (<6.0)

Hope this makes sense there were a whole lot of results before them but I am assuming it is only these ones that are needed.

Thanks

radd profile image
radd in reply toJill35

Jill,

Many people function better with a TSH of around 1.0 and FT4 in upper third of range. (As your meds stabilise, TSH goes down and thyroid hormone result should increase).

Postpartum Hypothyroidism doesn't always reverse and you have elevated TPOAb denoting Hashimotos Auto Immune Disease which is common in hypothyroidism. A high antibody count can bring about inflammation in the body which is very destructive.

Members have found eating a gluten free diet to be beneficial. Also supplementing selenium known to reduce TPOAb and help with thyroid hormone synthesis.

There is thought that when initially medicating thyroid hormone replacement, the adrenals glands should be supported. Adrenals glands often become compromised from compensating for low thyroid hormone levels (as both are stimulated by the pituitary) and unable to keep up with the increased metabolism.

I too started initially medicating a high dose of Levo and suffered dreadfully, ending up a wreck. It may be prudent for you to investigate adrenal supports. Post a new question for members suggestions.

Thyroid meds will work better with optimal iron & nutrients. If you post all other test results in a new post, members will comment.

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Thyroid//Gluten Connection

chriskresser.com/the-gluten...

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Thyroid//Adrenal Connection

hypothyroidmom.com/a-balanc...

Jill35 profile image
Jill35 in reply toradd

Thanks I will try and post later when my girl goes for her nap

shaws profile image
shawsAdministrator

As others have commented, 125mcg is rather a high starting dose. My TSH was 100 and started on 50mcg.

If you, by any chance, get palpitations or high temp and feel unwell, speak to your GP about reducing your dose. Usually, it is a gradual increase every six weeks after a blood test until you feel much better and symptoms relieved.

Blood tests: The procedure:-

Always make the test at the very earliest and fast but you can drink water

Allow 24 hours approx between the last dose of levo and the test and take it afterwards

Always take levothyroxine on an empty stomach, usually first thing with one full glass of water and don't eat for about an hour This is so food doesn't interfere with the uptake of the hormones.

You can also take a dose at bedtime if you prefer, then you have to have an empty stomach so last eat about 2.5 hours previous to taking levo. If you do bedtime, you miss this dose if having blood test next day and take it afterwards. You can also take the dose at bedtime as usual.

Angelic69 profile image
Angelic69

I've been on 125mcg for a while and my last blood test said tsh 1 which is a normal level but I also have pains in hands and feet.

Jill35 profile image
Jill35

Hi do you get spasmodic cramps in your hands and feet? I get them in my lower limbs too. Putting a shoe on can cause cramping. But my hands and feet ache generally lifting a kettle can hurt them. I just though at first it was just getting older but I am only 38. The Dr thinks my Thyroid problem has been caused following giving birth but my daughter is 13 months now so I think a lot of the tiredness and general lethargy I put down to being a new mum also the muddledness in my thinking.

I just want to feel better so I can get on with my life with my kids and have fun.

TSH (0.35-5.00) *44.70

Free T4 (9.0-21.0) *<5.0

Thyroid Perox ABs * >1000.0 (<6.0)

Results from my tests.

anita16 profile image
anita16

Having read the posts I thought I should add my experience....I felt weird at first in 100mcg but it takes a month to truly get in your system which may be why they gave you a high dose but I don't know as not a doctor, just sharing my experience. After a little while I went back to the dr asking to check for head lice as my scalp was so terribly itchy like I was an alien. Dr laughed and said my body was now getting what it needed and I would find my hair follicles stimulated. My hair grew thicker and stopped falling out quite so much.

Jill35 profile image
Jill35

Oh I have a really itchy scalp - might be this just started a couple of days ago OMG if my hair is going to get any thicker I will melt I already have loads of hair and always need to get it thinned.

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