I received a diagnosis of hypothyroidism last month on a visit to hospital for a fast heart rate/after bloods were taken. My TSH was 37.5. The hospital started me on 50mg of Levothyroxine and said I should be tested after six weeks. I have today received a text message from my Dr, stating I have autoimmune hypothyroidism. No offer of appointment to discuss any concerns/questions and she has said I should have my levels checked mid-November, which is contrary to what the Endocrinologist said at the hospital. I feel really upset that my Dr delivered this by text. Is this what I can expect? Do Doctors constantly ignore the guidelines? I feel like I’m just being left to get on with it. I’ve not even had a check in with them to ask me how I’m feeling.
Thank you in advance.
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Cavalierloversam
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Bloods should definitely be tested 6-8 weeks after each dose change in Levo
50mcg is only the standard STARTER dose
Likely to need further increases in dose over coming mo
Write to GP requesting retest of thyroid levels at 6-8 weeks as endocrinologist requires and also request testing including vitamin D, folate, B12, ferritin and coeliac blood test as well
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Unfortunately as the NHS is so understaffed and underfunded many messages are delivered by text these days.
If you're not happy with what you've been offered then get in contact with your GP and request to be tested earlier. You will find that being proactive and not waiting for your GP to do something will get things moving faster.
When you get retested can often depend on the individual doctor who is ordering the tests. The longest would be 3 months, but more often 6-8 weeks which is the minimum timing.
Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Thank you very much for your help. I haven’t been tested for any vitamin deficiencies. My mum has pernicious anaemia which I believe can be hereditary and is also autoimmune condition. It might also explain my fast heart which hasn’t resolved itself.
Unfortunately the care can fall short of what is required. Most professionals I’ve spoken to, agree that you can retest after 6-8 weeks. My endocrinologist thought it was ok to leave me with a tsh way below the bottom of the range. So I’m adjusting the Levothyroxine with the support of an ANP. I’m reluctant to leave him as he prescribed the Liothyronine which I desperately need.
How are you feeling? What symptoms ?I would hope you are feeling a little better and are tolerating tablets ok. If so this is a big step in itself.
Unfortunately getting to correct dose takes months and months. Your body will take time to heel once its got its energy levels back.
This forum is frequented by the 10 to 15% who struggle with thyroid issues and are more complex. many are fine and simple to treat and do not need the forum
Fingers crossed for you. Don't be frightened.
It takes a while to correct dose, just ring doctors and force an earlier appointment. Someone has made a mistake .
I guess your doctor thinks the hospital have gone through it all.
I thought I was hard done by finding out by telephone. No one ever explained the disease, doctors training is that it is very simple, which it can be.
Get access to blood test results.
Often some sort of app now. Ask reception.
Write stuff down to track symptoms, dose and what is next.
Thank you for your words of wisdom. I haven’t felt great, particularly to start with I felt very sleepy. I’m now on a different brand of tablet to that initially provided and I have a bit more energy. Prior to taking them I felt like I was wading through treacle and everything felt like an effort.
It would have been nice to have had a quick chat with my dr about autoimmune thyroiditis , to have asked a few questions. As it is, they don’t want to retest until mid-November and so I will hear nothing until then.
The communication between hospitals and GP's is dire. I had an exacerbation of asthma in February and needed emergency treatment, supposedly on discharge this should flag up seeing a GP or asthma nurse within 48 hours for a review, according to NHS guidelines.
I think they eventually got round to offering me a review about 3 months later. I didnt bother going, clearly it wasnt urgent or important to them and by that time my asthma was under control.
It is a very slow release hormone it weeks for blood levels to come up. I would call doctors and ask reception to ask question. White lie not feeling right ... when your near the end of dose increases 3 months is ok but not at start.
I noted on earlier post about heart issues. As your thyroid glands are dying off they can release stores and throw you all around.
If your not too bad slow and steady is not a bad thing ...
I received a diagnosis of hypothyroidism last month on a visit to hospital for a fast heart rate/after bloods were taken.
It is possible that your fast heart rate [known as tachycardia] was being caused by untreated hypothyroidism or untreated hyperthyroidism. But there are many other causes of it too.
For example, severely low iron/anaemia can cause tachycardia, and low iron/ferritin are common in hypothyroidism.
So, ask your doctor to do an iron panel to find out if your iron/ferritin are very low. You don't need just a ferritin (iron stores) test, which is what they usually do. Note that ferritin can be low while serum iron is high, and vice versa, and different combinations of results tell you different things about your health. When you get such a test done ask for the results and reference ranges once the results are known, post them on the forum in a new post, and ask for feedback.
They vary according to who does the test but an iron panel usually consists of :
Serum Iron
TIBC (Total Iron Binding Capacity) or Transferrin
Percentage Saturation
Ferritin
If you are lucky - CRP (C-Reactive Protein) - a measure of inflammation which affects ferritin level.
And in an ideal world, but almost never happens - Haemoglobin.
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