Thyroid UK
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Thyroid

I feel so unwell, have been on either 25 mcg or 50 mcg levo since diagnosis 6 years ago. Feeling cold, dry and sensitive eyes, ulcers in and around mouth, tired, feeling low, emotionally flat, losing hair, puffy eyes, loss of appetite, gaining weight, heavy periods, flaky nails, thyroid swollen, lost appetite, irritable bowel type symptoms. Been going on for 4 months. Will I ever get better? Feels like I never will. Advice appreciated.

Dec 2017 (50 mcg)

TSH 4.8 (0.2 - 4.2)

FT4 14.4 (12 - 22)

FT3 3.2 (3.1 - 6.8)

TPO antibodies 671 (<34)

TG antibodies 566.3 (<115)

22 Replies
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Lorrete, what reason have you been given for being left on such low doses and why reduced back down to 25mcg?

What blood tests have you had in the last 4 months? You could ask your GP to refer you to the Endocrinologist with these symptoms. It seems you are undermedicated. Have you had blood tests for levels of Vitamin D, B12, Folate and Ferritin? Did you ever have your Adrenal Function checked? Are you on any other medication or taking supplements. Did you start a new medication 4 months ago?

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I have had 1 blood test within the past 4 months. Reason I have been on low dose for so long is because of my size. Endo has been made aware of the GP not adjusting my dose. No adrenal tests. I started no new medications 4 months ago

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I'm not sure what you mean by your size, you're gaining weight aren't you?

You are clearly suffering symptoms of Hypothyroidism. What blood tests have you had, could you give details and results with ranges in brackets.

If you are in touch with your Endo, then I would contact their Secretary and ask to be seen in clinic asap. Ask for full TFTs - TSH, Free T3 and Free T4, T3 and T4. If you've never had Thyroid Antibodies tested (which you probably have if been seen by an Endocrinologist in past) then ask for them also.

Did you have an Ultrasound scan of your Thyroid.

Ask for tests to check Adrenals, however my Endo did that first before I started my Levo so not sure about that.

I think I would go to Endo with list of symptoms as you've written in your post. If you can't get in to see or speak to Endo then see a different GP at the practice. Is there anyone you can take to GP and Endo appoinments with you for a bit of support?

Ask GP to test those nutrients levels already mentioned. You probably have deficiencies in some or all of them. Once they are addressed and you have adequate prescribed supplements, this will help .

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I am still very thin but gaining weight around my middle. Ultrasound showed thyroid hypoechoic and enlarged. No one to take with me to appointments. Mum and dad accompanied me to one and asked the GP to prescribe me antidepressants which she did. Boyfriend hates me talking about my health and refuses to come to appointments. Will post bloods now.

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Sorry to hear of the lack of understanding and support. Never mind that now. You just come here as often as you want to. You will get all the support you need.

Sorry to hear about the antidepressants and SO glad you are not taking them!

You WILL feel better.

It will take a little while. You feel so low now because you don't have enough Thyroxine in your body and every bodily function is being affected.

Just write down all you want to ask your GP and present your list with your list of symptoms.

Politely but firmly say this is what you are suffering from and this is what you are asking for.

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You have to look after yourself - no-one else seems to care about you and you should not take anti-depressants if you are on hypothyroid medication if your T3 is low, as yours is.

What you desperately need is a Free T4 and Free T3 and I bet you both will be below range which will make you unwell and also your TSH is too high as it should be 1 or lower.

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You will be depressed because you are under medicated ! You do not need anti- depressants.

I think you should also consider how your relationships will be in the future if you get no support now.

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Results added

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So, you have Hashimoto's Autoimmune Thyroiditis and your TSH is too high.

What date in December were these tests? Were you on 25mcg before and put on 50mcg on receipt of these results.

OR, were you on 50mcg already and left on 50mcg? If the latter then you should be on 75mcg.

If you were increased from 25mcg to 50mcg in December then you will need to wait till next test. When will that be?

It is vital you have the nutrients tested:

Vitamin D

Calcium

B12 & Folate

Ferritin.

You most probably have deficiencies. You need any deficiency treated so that your Levothyroxine can work properly for you.

When did you last see Endo or GP before December?

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21 December the bloods were done. I was on 50 mcg before and still on 50 mcg now. I last saw endo in November 2017. GP I saw mid December 2017 before bloods.

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So you haven't seen either Endo or GP since these results? Have you checked with the Receptionist to see if a Prescription has been left for you?

How did you get the results if you haven't seen anyone? If you contact your Endo or GP then you should be told to take 75mcg.

It was GP who arranged these bloods? So I don't understand why you say "Endo has been made aware that GP is not adjusting dose" ? What did Endo do for you in November? No bloods??

You need to see GP - get on to your next dose 75mcg - and ask for the nutrients blood tests.

If you want any dietary tips with regards to the irritable bowel symptoms , let's know.

It's best to always put full information up front on your post. It saves a lot of time. Always give full dates of tests.

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Haven't seen endo or GP since results. Receptionist has told me results don't indicate undermedication so no prescription needed. I got results from receptionist at GP surgery. GP did bloods and she wrote results nothing to worry about. I saw endo in November regarding symptoms and he asked GP to monitor my thyroid function

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Phone Endo's secretary 9am tomorrow. He should have told your GP your target therapeutic level of TSH.

When you saw Endo in November he should have tested and treated you until you were stable and your symptoms improved.. Then referred you back to GP for life monitoring with advice on level where your TSH needs to be maintained.

Endo has just passed you back to GP it seems.

Well you are not a ping pong ball in a game of table tennis . This is a disgraceful way to treat a patient suffering such symptoms.

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Your results are very close to mine when I got diagnosed, started at 75mg and eventually went up to 200 mg of levothyroxine. The receptionist is wrong, he/ she is not a doctor. Can you get another GP? Levothyroxine made me gain weight.

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Both your doctors are useless and putting you in danger. You have to look after yourself if doctors are not doing as they should do i.e. relieve all clinical symptoms and you should have a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the range. These are rarely tested but you can get private ones.

Insist on your TSH being brought down to 1 and say you've taken advice from the NHS Choices for information and advice on hypothyroidism, Thyroiduk.org.uk.

thyroiduk.org.uk/tuk/about_...

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Results added

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You are a poor thing being undertreated for six years by a miserable 50mcg of levothyroxine or even 25mcg.

Normal doses of NDT (natural dessicated thyroid hormones) which was prescribed to us before the introduction of blood tests and levothyroxine, we used to be prescribed doses (very gradually) until we were symptom-free and doses were usually around 200mcg to 400mcg per day. NDT contains T4, T3, T2, T1 and calcitonin which our healthy gland would have produced.

You need an immediate increase of 25mcg of levothyroxine and starting dose should have been 50 mcg of levo with an increase of 25mcg every six weeks until we are symptom-free with a TSH of 1 or lower and a Free T3 and T4 towards the upper part of the range. These two are rarely tested.

Once you realise that doctors are the least knowledgeable and we have to read, learn and ask questions in order to recover our health.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards. This keeps our TSH at its highest as doctors adjust unnecessarily according to the TSH.

Ask also for B12, Vit D, iron, ferritin and folate as deficiencies also can cause symptoms.

Levo should be taken, usually first thing, with one full glass of water and wait an hour before eating. Food interferes with the uptake of hormones.

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I was hypothyroid for decades but always as thin as a rake so weight does not directly correlate to the severity of the disorder, and should not be used to determine dose of Levothyroxine it is very bad medicine. Your doctor is incompetent.

You need more medication not less as indicated by your blood tests.

Good job you are here and can get some decent support which you dearly need and appears to be totally lacking from the very person directly responsible for your health and medication - your doctor. Can you see someone else?

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I was in the same place as you. I was on levo for about 8 years, super sick for about 2 of those years. Levo is a atimulant so if you don’t have the hormone you’re missing there’s tons of symptoms that will keep getting worse. I was taken off levo and put on natures Thyroid 65 mg a day. You need t3 and t4

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Hi, I,ve been taking 25mg off Levo for 5 months, thought I was jogging along o.k. Tha last couple of weeks I have started to feel unwell, really tired , dry mouth, eyes and lips,sometimes feeling a bit unbalanced,funny feelings in neck and shoulders, does anyone relate to this please. 😔😔

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You are under medicated which is why you feel so unwell. Ask your doctor for an increase and insist!

Karen

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I found going gluten-free helped my IBS. I can sympathise as I was left on 50mcg for five years and became very unwell until a private endo gave me T3 and told me to slowly increase my T4. I am now on 150mcg T4 and a lot more stable. I have M.E as well but that's another story.

Karen

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