Hi, I've been following this site with interest since my diagnosis but have never had the courage to ask for advise but today is the day. So here goes…..
I have felt awful for a couple of years now. Due to my age (48) and medical history I was diagnosed as peri menopausal and have been on HRT for around 2 years which has been changed multiple times but have still never felt 100%. In November 2021 I went to see my foot surgeon who had taken some bloods for medication and it was He that told me that my bloods showed Low Thyroid & he wrote to my GP asking them to look at it. After weeks of me chasing them up they finally agreed that I needed repeat blood tests and then in January it was confirmed that I was under and he prescribed 50mg Levo. However this was all done over the phone!!! I have never seen my doctor (due to Covid restrictions at my surgery) So the condition has never even been explained to me. I still feel awful with many many symptoms but I don’t know if it’s thyroid or peri-menopause that’s causing them. My main issues are tiredness/lack of interest in anything, weight gain, lack of libido, palpitations, muscle aches & muscle cramps in legs and palpitations. Additionally, I have also had pain & a little swelling in the middle & side of my clavicle and I can feel a small lump (like a pea). But I’m sure this is not connected to either.
I have had repeat blood tests and I am still under range, although the doctors (again over phone/messaging service) have not felt need to change dosage as it’s classed as borderline. I’m a very anxious person and don’t like bothering my doctors and the times that I have called I just get told to call at 8am the next day which isn’t always practical or I do so and am 57th in the queue!!
What would everyone suggest I do? Like I said I have had no explanation from a doctor so I have little understanding of results. What I have learnt has been from you lovely lot.
Thank you & sorry for the long post.
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Nelliebear
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Hi, I'm also new here and trying to get to grips with it all. As such, I have no advice but just wanted to say I hear you, it almost feels like my doctor sticks her fingers in her ears any time I mention my symptoms and diagnosis, they really don't seem to have a clue. BUT everyone here is amazing in the time and advice they give, we are very lucky to have them and I know you will get much more support here than from your doctors, so we'll done on finding the courage to post.
Do you have your actual thyroid test results? If not please obtain them - your surgery might have online access which you can register for or if not ask the receptionist for a print out of your results. Once you have them please post them along with the reference ranges that come with them (ranges vary from lab to lab so we need the ranges that come with your results or we can't interpret them). We can then help with whether or not you need adjustment to your dose of thyroid meds.
My surgery doesn't have a queueing system with phone calls, you either get through or get the engaged signal. 8am is the time to call for an appointment so anything else we can call later in the day. So maybe call late morning or in the afternoon to ask about a print out of your results and you might not be in a queue.
Thank you for your response. These are my results starting with the most recent.
In response to the appointment issue - my doctors only operate on a same day telephone appointment only. No pre bookable appointments at all. So we have to call at 8. It’s slightly ridiculous to be honest. Though I do appreciate that they have hard job trying to please everyone.
my doctors only operate on a same day telephone appointment only. No pre bookable appointments at all. So we have to call at 8.
Yes, that's the same as mine, but for anything else you can call later in the day which is why I suggested you call for your results later without the big queue, but I see you already have them
I'll concentrate on vitamin and thyroid results, the others are either in range or not something I can comment on.
So these were the results that gave you a diagnosis and prescription of 50mcg Levo.
These results suggest Central Hypothyroidism which is where the problem lies with the pituitary or the hypothalamus rather than the thyroid. When the thyroid is at fault it's Primary Hypothyroidism. Central Hypothyroidism is diagnosed when TSH is low, normal or minimally elevated with a low/below range FT4.
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). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:
You could do some more research, print out anything that may help and show your GP if you feel that he would welcome information about the cause of your hypothyroidism.
However, you have been started on Levo and that is the treatment for hypothyroidism whatever the cause.
So after 3 months of 50mcg Levo you still have a below range FT4 which indicated you should have had an increase in your dose. Unfortunately most doctors only adjust dose by looking at TSH which is wrong, it's the FT4 and more importantly the FT3 level which gives our thyroid status, and TSH should be disregarded in Central Hypothyroidism because it's not getting the signal from the pituitary to reflect your FT4 level.
**
JUNE 2022
I am still under range, although the doctors (again over phone/messaging service) have not felt need to change dosage as it’s classed as borderline.
So again we have a below range FT4 level but it's even lower than before.
This is not borderline, you need an increase in your dose and unfortunately your GP is ignorant of how to treat hypothyroidism and obviously totally ignorant about Central Hypothyroidism.
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. We can disregard your TSH for reasons stated but your GP must understand that any Hypo patient needs to have FT4 well within range, where that may be is very individual but you should be prescribed enough Levo to alleviate your symptoms.
So you need 25mcg increase now, retest in 6-8 weeks. Further increases will be necessary, these should be in 25mcg increments until you feel well, fine tuning may be necessary as your get nearer your sweet spot so increases could be 12.5mcg or even 6.25mcg (small increases like this can be achieved by either cutting tablets or taking different amounts of Levo alternate days, etc).
Serum vitamin B12 level 246 ng/L [197.0 - 771.0]
This is very low. Many people with B12 level in the 300s have been found to need B12 injections.
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Do you have any signs of B12 deficiency – check here:
If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
Doctors are supposed to take symptoms as more important than results with B12.
Serum folate level 5.0 ug/L
Although there is no range this is low. When there is no range we suggest to aim for a level in double figures. However, if you have any symptoms of B12 deficiency then treatment for that must start before taking anything to improve folate level. So do check the signs/symptoms of B12 deficiency and let us know if you have any, if you don't I can suggest what can be done for both of these results.
My main issues are tiredness/lack of interest in anything, weight gain, lack of libido, palpitations, muscle aches & muscle cramps in legs and palpitations.
These are all symptoms of hypothyroidism but as you have low Vit B12 and folate then it's very likely your Vit D and Ferritin are low as well. These are the four key nutrients which need to be at optimal levels for thyroid hormone to work properly. Low Vit D can cause joint and muscle aches and pains, low ferritin can cause fatigue plus many other symptoms.
**
What I would do now is contact your GP, tell him that you have spoken to ThyroidUK which is a thyroid charity recommended by the NHS for information about thyroid conditions. Say that you have been told that the cause of your hypothyroidism is very likely Central Hypothyroidism and that you have been told that your below range FT4 is not borderline but confirmation that you asre undermedicated and that FT4 and FT3 should be at least over half way through range and that you now need an increase in your dose of Levo and to be retested in 6-8 weeks.
Also say that you have been recommended to get Vit D and an iron panel tested - iron panel to include serum iron, transferrin saturation percentage, total iron binding capacity and ferritin. The iron panel will show if you have iron deficiency or just low ferritin. Your full blood count above does not show anaemia and you can have iron deficiency with or without anaemia.
**
This is the advice we pass on to members about testing:
* 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.
In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:
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.
* Nothing to eat or drink except water before the test - 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. Certain foods may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw (if taking NDT or T3 then last dose should be 8-12 hours before blood draw). Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. 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 can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
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.
**
This forum is provided by ThyroidUK and there is a lot of information on their website which you might want to check out:
Oh my goodness!!! Thank you so so much seasidesusie. I have just learnt more in 2 minutes of reading your response than in 7 months of being diagnosed. This is invaluable information to me and I actually feel like I have a reason for feeling the way I do - a weight has been lifted off my shoulders. THANK YOU. I will read the advice multiple times to understand your recommendations fully and then I will definitely contact my doctors fully armed with the info needed.
Hopefully you will now get the increases that you need.
When mentioning ThyroidUK to your GP, don't mention internet or forums, just say that you have "spoken" to them. GPs tend to poo poo/ridicule anything to do with the internet or forums when it comes to information about the thyroid.
I hope you don't find that your doctor is ignorant about how to diagnose/treat patients who are hypothyroid.
I had to diagnose myself after being told I had no problems with my thyroid gland. I certainly did and thanks to Thyroiduk (who are behind this forum) I learned a lot and have had my health restored and am symptom-free.
I' m so sorry that you have joined the band of poorly diagnosed and wrongly medicated hypos.
However, you have come to the right place for support...like over 125.000 thyroid patients who have already needed help!
Your treatment has been abysmal.
50mcg is only a starter dose
You say follow up tests are borderline.....that is not a reason not to increase your dose.
Suggest you ask at reception ( not the GPs) for copies of your labs....you are legally entitled to do this
If you post them here including reference ranges members can have a look at whet is going on
Full thyroid test....
TSH, FT4, FT3, vit D. Vit B12, folate, ferritin and thyroid antibodies.
Your GP possibly only looks at TSH which is unreliable following diagnosis!
However, many of us have private thyroid tests because those done by the NHS ( TSH and possibly FT4) are limited and do not allow for accurate thyroid function evaluation
Doctors are there to help and treat unwell people.... asking them for help is not "bothering them".
Suggest you start by requesting all lab results from surgery, posting them here, with reference ranges....and asking as many questions as you feel need to be answered
Thank you so much for your response - I have posted all my lab results on another reply and have had another amazing response. I will most definitely check out all the links you have sent. So thank you again.
I really don’t know why I left it so long to message this site. You people are amazing!!
The first step is always the hardest.....here, we're all in this thyroid mess together, so we have lots of experience and there is always someone about to answer questions.
Yes, you're definitely in the right place 😊 Keep posting and learning till you feel well...it takes a little while to work it all out, but you'll get there. I was helped to regain my health after decades of debilitating illness, with no help at all from GP's and an assortment of 'specialists'. The experts are all on here! Good luck on your journey 🍀 x
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