Do the NHS only prescribe when your tsh is over 5 or 10?
Also could hypothyroid be hereditary. My dad and my aunt has it.
I was tested at 8.6 and put on 25 lowest dose. I'm still struggling with brain fog severe fatigue and my body hurts like I'm 20 yrs older than I am.
I had an an appointment with a nurse practitioner who seems to think it might be menopause instead because she thought the other nurse diagnosing hypothyroidism at 8.6 tsh was hasty. I went to ask if they would trial me for 2 months on 50 mg to see if it made a difference.
I feel so low because I feel so unwell most of the time. I wake every morning feeling like I'm hungover. When I was first diagnosed , whilst waiting for prescription I googled what the condition was and I could tick every listed complaint on the NHS website.
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Do the NHS only prescribe when your tsh is over 5 or 10?
May doctors wait until TSH reaches 10, that is when it is "overt hypothyroidism". Some doctors will prescribe when it is over range but below 10 and that's classed as "subclinical hypothyroidism".
Also could hypothyroid be hereditary. My dad and my aunt has it.
Yes, it's often the case that if a family member has is then another may develop it. Not set in stone, of course, but very common.
I had an an appointment with a nurse practitioner who seems to think it might be menopause instead because she thought the other nurse diagnosing hypothyroidism at 8.6 tsh was hasty.
It's normal to do a follow up test after the first raised TSH before prescribing. This is because TSH can be raised due to non-thyroidal illness. If you've had a previous test with raised TSH then the original nurse wasn't being hasty.
I'm still struggling with brain fog severe fatigue and my body hurts like I'm 20 yrs older than I am. ........ I went to ask if they would trial me for 2 months on 50 mg to see if it made a difference.
Normal protocol is to retest 6 weeks after starting Levo, then increase dose by 25mcg. Continue retesting/increasing every 6-8 weeks until levels are where they need to be for you to feel well.
TSH alone is not a good indicator of thyroid health. FT4 and FT3 are the thyroid hormones, TSH is a signal from the pituitary to produce thyroid hormone if it detects there's not enough. So as a minimum TSH and FT4 should be tested, ideally FT3 as well but it's usually the lab who makes the decision what to test regardless of what the GP requests. Often if TSH is within range then nothing else is tested.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
Often we hypos have low nutrient levels or deficiencies and optimal levels are needed for thyroid hormone to work properly. It's advised to test
Thank you. In February lat year I had a massive bleed, 35 days before medical intervention, they said my hormones were normal regarding menopause. I was severely anemic and ferritin depleted. Despite taking double dose iron my iron dropped to 98 from 103 over 2 weeks. The medical intervention was a merena coil. Throughout the summer I still felt unwell, anxiety brain fog memory aching . In September I got a message to make an appointment for my long term condition. I didn't have one. I called the surgery to ask about it and was told they will get my doctor to check my file but instead I asked to make an appointment because of the symptoms I had. That is when I was diagnosed with hypothyroidism. I'm guessing the system picked up something from all the tests in February. I was diagnosed early October.
After 25mg prescribed my hair grew back. It broke all over in April. I didn't hurt as much . After 6 weeks my tsh was 3.9 but as the year has gone on I hurt more , my memory is bad and anxiety returning. My friend gave me 2 weeks of her 50mg . I didn't feel any better until nearly ten days after I stopped. I had clarity a bit more energy and felt positive. It didn't last long back on my 25.
When I was diagnosed it was like an eureka moment matching my symptoms but now this nurse is says my symptoms of severe fatigue anxiety memory loss/ brainfog and constipation doesn't all point to hypothyroidism. 🙄
It appears unless you have a sympathetic GP the NHS will not step in until your TSH reaches 10 or above, by this time you feel absolutely awful.
However, you have been give a trial of Levothyroxine at 8.6 which is good.
What the nurse has told you is completely wrong and just shows how uneducated they are.
You have symptoms still because your still under medicated.
25mcg Levothyroxine is not an adequate dosage at all, it’s just a starter dosage and normally 25mcg is for the elderly or people with heart conditions.
You should of been put on 50mcg of Levothyroxine and then a blood test after the 6-8 week mark. You need to test TSH, T3 & T4, testing TSH alone is not adequate.
Then you increase your Levothyroxine by a further 25mcg every 6-8 weeks and repeat the process until your TSH is around 1 or below, and your T3 & T4 is in the higher range of the lab figures, but, most importantly you feel well.
I would guess that as soon as your TSH reaches the higher range of the lab figures, they will not increase your Levothyroxine.
Levothyroxine is for life, don’t let them say you no longer need it. I’ve had a friend recently that’s been told as her thyroid results are in range they have stopped her Levothyroxine, absolutely shocking and disgusting.
Make sure you have your thyroid blood tests as early in the morning as possible before 9am, don’t take your Levothyroxine before your blood test, drink water only and no eating. This is a tip that is passed on this forum and we ask that it’s not mentioned to your GP/endo/nurse. Why? Well your TSH is always high in the morning and you desperately need your TSH to be high to continue your increases of Levothyroxine.
No that isn't the "rule" although it is the experience of many, but not every, newly diagnosed patient. You can refer your GP or Nurse to the CKS/NICE guidelines regarding subclinical hypothyroidism where the TSH level is below 10:
Many people with SCH do not need treatment, but if a decision is made to treat, prescribe levothyroxine (LT4).
Do not prescribe combination therapy (LT4 and LT3) in primary care.
Aim (in most people) to reach a stable TSH level in the lower half of the reference range (0.4–2.5 mU/L).
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4. ........
Follow up of people with SCH who are started on LT4
Reassess symptoms on treatment. If symptoms have improved, lifelong treatment may be considered. If symptoms have not improved or if adverse effects are reported, stop LT4 after a 3–6 month trial.
Once TSH has normalized, TFTs should be measured at least annually thereafter.
Regarding Initiating and maintaining dosing, the guidance states:
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
As a general rule of thumb I would always refuse to discuss any aspect of my health with a nurse. Fortunately I can attend the local hospital's phlebotomy unit when I absolutely can't avoid having a GP-requested blood test, so don't get involved in any discussion with them about my treatment.
It is highly likely given your symptoms that you are undermedicated, not surprising as you were started on less than the recommended dose, as has been alluded to by others. When that happens, we can often feel worse than before we started taking the Levo, rather than better, because of the negative feedback mechanisms in play between the hypothalamus, pituitary and thyroid glands.
Essential to test both TPO and TG thyroid antibodies to see if cause of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's
As your Dad and Aunt are hypothyroid, it's likely you have Hashimoto's
Low vitamin levels are extremely common with Hashimoto's
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
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
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