I had my bloods taken yesterday because I have been experiencing a number of awful symptoms. Bloods were taken at 09:15, and on an empty stomach, sans my medication for the morning to try get an accurate reading.
This morning I received a text message to say 'bloods were fine but it looks like your thyroxine is under-dosed. Please make routine telephone appt to discuss'
Now I am not convinced by this. I haven't felt this awful in a long time; I get chest pains frequently; up to 15 times a day, lasting 2 - 10 seconds. I've been to A&E, and can confirm it's not my heart (after X-rays and ECG) so the ticker is fine. But these chest pains are not. I was advised it could be anxiety but I highly doubt that. Other current symptoms include: fatigue, depression, weight-gain, brain-fog, headaches, mood swings (high irritability), tremors, issues with digestion.
I am currently on 100mcg daily, taken ~7am on empty stomach/no caffeine. I am also taking Escitalopram (at the same time) and on the Nexplanon (implant contraceptive). Although I was diagnosed a year ago, I don't fully understand how to read the results. I would really appreciate guidance from the community on what questions to ask my GP so that I can really manage my condition? Since diagnosis March 2021, I have increased 4 times and this will be my 5th time. What could I be missing? Any advice welcome.
Thanks in advance,
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Dusty1990
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Well, you certainly sound under-medicated to me. Do you have the actual numbers for your results: results AND ranges? If so, post them here and let's have a looK. If not, ask at reception for a print-out. It's your legal right to have them. We understand them and can explain them to you.
It's perfectly normal for people to have four or more increases - brownie point to your doctor for doing that. With hormones, you need to start low and increase slowly. For levo that means starting on 25/50 mcg (depending on age) and increasing by 25 mcg every six weeks. That's the way it's done. I cannot tell you if your chest pains are due to under-medication, but you do have a lot of other hypo symptoms. So, increasing your levo is the best way to go. 100 mcg is not a high dose.
That said, if you're taking Escitalopram at the same time, it could be that you're not absorbing much of your levo. Levo should be taken on an empty stomach, either two hours after or one hour before food, and at least two hours away from all other medications and supplements. Can you either take Escitalopram at some other time? Or take your levo at bedtime?
Thank you! Yes, I will get a copy of the results - might take a walk and go pick them up today and will post here. When the GPs take blood, do they also look at other areas such as vita min D etc? Or will that be in the results?
Okay - thank you so much for the reassurance. I am 31 (nearly 32), and suspect that I have had an underactive thyroid for a much longer time before diagnosis.
I did wonder whether the Escitalopram might affect it, so I will move that to bed time and take thyroxine in the morning. I am also having the implant removed - because although there isn't enough research or evidence, I strongly suspect that my body is having trouble with the combination. Implant should be removed in 2 weeks, and I will book a follow up blood test for thyroxine 6 weeks after (so still in 6-8 week range).
Is there a point where my levels my stabilise? Or is this a condition that may need constant monitoring? It's affecting my relationships, because of both physical and emotional symptoms. I am really battling.
Highly unlikely they would test vit D without having their arms twisted. They know little of nutrients and don't understand the importance.
At 31, your doctor should have started you on 50 mcg, not 25. I remove that Brownie point!
There should come a point where your levels stabilise. But, stabilisation is not the main goal. What you want most of all is an optimal dose. You could be stable with a TSH of 0.1 or you could be stable with a TSH of 100. But I know which one would be best for you!
However, it does still need monitoring, because circumstances may change - things like weight loss, improved digestion, age, etc. - which may mean that your dose needs tweaking slightly. It's unrealistic to expect to be able to manage on the same dose for the rest of your life. So, once you're optimally dosed, labs should be done at least once a year, just to be sure. More often if you start having symptoms.
I'm afraid hypothyroidism does tend to affect relationships because no-one can really understand what you're going through unless they have it themselves.
I cannot tell you how grateful I am for this info and for this feedback. I feel so alone, and often wonder if it's all psychological.
I am walking to GP shortly to pick up the results and will post here. I am so tired of feeling this way, and the depression & fatigue makes it that much harder to try and manage.
Is there any evidence or theories on how stress might affect thyroid production?
I'm not sure stress has any effect on thyroid production - although I'm pretty sure there are plenty of theories on that, because some people like to blame everything on stress. However, there are many other things that can affect the thyroid. Were you given any sort of explanation for your hypothyroidism? Did they test your antibodies?
Not that I am aware of, but back when I was diagnosed, I didn't fully understand the gravity of this - and it wasn't really explained. But I am hoping that the tests that they have run now will provide some insights. Plus I am booking a follow-up consultation so I can ask these questions. I will post the results on this thread as soon as I can.
Problem is, they rarely do all the right tests at the same time. Which is why so many people get private tests.
It's often impossible to find out what caused you to be hypo, unless you have high antibodies. In which case, the cause of your hypo is Autoimmune Thyroiditis, where the immune system slowly destroys the thyroid. But, even then, it's impossible to find out why you have Autoimmune Thyroiditis (aka Hashi's). Which is why doctors are not interested in what caused it, but you should have antibodies tested because of the way Hashi's behaves: forwarned is forarmed, so to speak.
I called the surgery and they've booked me in for more blood tests week after next 👀 trouble is, I still have to endure my symptoms until then. Why would they run my blood tests when they know it's low?
I'm going to book private for the other tests, or also buy a testing kit online - everyone has been so helpful!
😂😂😂😂 Have to laugh else one can cry. My results came in, I added them right at the bottom on the thread. It's hieroglyphics to me, could you please have a peek?
As awful as it is, it's a relief to hear that I'm not the only one crying here. I feel medically gaslit, or I'm gas lighting myself. Some days are so awful, and this process is so frustrating.
I don't doubt that you are being medically gaslit. That's what they do. They do not understand thyroid, what it is, what it does, what happens when it goes wrong, so they try to put the blame for all the symptoms on the patient - e.g. 'if you could only lose weight...' 'it's your age...' 'it's the menopause...' - and the one I got from my first endo: it's your negative attitude!!! Yes, we all get gaslit until we learn about our own disease and start standing up for ourselves, and fighting back.
if they texted to say "you appear under dosed on levo, make telephone appointment to discuss" , then presumably your dose can be increased straight away with just a phone call.
A 25mcg increase is reasonable if your TSH was over-range on their latest test (which is usually the only reason they would voluntarily suggest an increase .. normally you would have to push to get an increased if your TSH is in range, as most GP's would see TSH 'in range' and think 'fine' )
I don't see any necessity to wait for further blood tests before getting dose increased ., since they've already said your latest blood results suggest dose not yet enough .
Being undermedicated is enough of an explanation for your feeling dreadful.
have you spoken to a GP on phone about the increase yet ?
No, I didn't speak to the doctor himself. Reception told me to see the doctor on 20th June for further tests. I said to reception that I called to speak to GP about the under-treatment but she told me to come in Monday in a week.What should I do? Should I call back and ask to speak to someone before? They do take about 2 weeks to fit someone in
to be honest , you probably wouldn't get a phone appointment to speak to one any sooner than that anyway .. so you may as well wait .. did they say what else they wanted to test ?
if it was me and i had enough tablets i'd just leave message for GP saying .. " i have increased levo to 125mcg from today since TSH is over rage " ... and then just get on with it anyway . ( trust me .. you'll get a phone call back pretty sharpish if they disagree)
But it's not so easy of you don't have any 25's .
if you have 50's you can easily cut one in half . but if you just have 100's it's a bit of a faff.
I am so annoyed, I *HAD* 25s but they are no where to be found - I think I finished them. I only have 100s... Bugger. And I really need this increase, my poor little body is suffering 🙄 Dang it. Okay, so another 10 days of this. Aside from being careful with time of day I take my meds, and what I eat, any other suggestions? It's been about 4+ weeks of hell 🙃 I mean, I could try quarter the 100 tabs but they're so damn small - haha!
I've been to A&E, and can confirm it's not my heart (after X-rays and ECG) so the ticker is fine. But these chest pains are not. I was advised it could be anxiety but I highly doubt that. Other current symptoms include: fatigue, depression, weight-gain, brain-fog, headaches, mood swings (high irritability), tremors, issues with digestion.
If your surgery says that you are under-dosed then I'd believe them. They don't often say that, it is more normal for people to write in and say "My doctor wants to take away half of my Levo, what can I do about it?"
So, I would say that some of the symptoms you're suffering from are caused by low thyroid hormones - most likely, low T3. It is T3 level that determines whether or not people feel well. If it is too high then people feel hyperthyroid, if it is too low they feel hypothyroid.
But another thing that people with thyroid disease suffer from is low nutrient levels. We end up with too little stomach acid and so food is not broken down well in the stomach, and therefore extracting nutrients is that much harder for the body to do. So we end up with low nutrient levels. The symptoms of under-treated hypothyroidism have a lot of overlap with symptoms of low nutrients.
The other reason for worrying about nutrients is that they are needed in the process of converting T4 to T3. And as I said above, it is T3 level that determines how we feel.
The symptoms you describe - particularly the chest pain with no evidence of heart attack is one of the symptoms of very low iron and/or ferritin (iron stores). I was asked about whether or not I was anxious when I was in the same situation.
I wasn't told by anyone medical in the NHS that low iron/ferritin caused chest pain and that improving it would help. I improved my iron/ferritin because I knew my levels were terrible and I had a list of symptoms very like yours, and doing so made my chest pain stop happening. But it does get a mention in some places :
So, if you could get your doctor to test for the following and then get the results we could tell you how to improve them (if necessary) :
Ferritin
Vitamin B12
Folate
Vitamin D
If ferritin is low then you would need to get an iron panel as well.
The problem we have is that doctors know little about nutrition as well as knowing little about the thyroid. So the kind of things we see are :
Doctor says a ferritin level of 13 is absolutely fine when the reference range is 13 - 150. But optimal for people with thyroid disease is approx 50% - 70% through the range i.e. about 80 - 110 with the range given. Similar comments could be made about other reference ranges for other nutrients. Bottom of the range is never optimal for any nutrient.
Thank you thank you thank you! This is the kind of info I need to go to them with. My digestion has always been a problem, and I do think this could explain away some of these problems.
I am booking a consultation to discuss my under-treatment and so I will raise all of this. The chest pains interfere with my day to day activities, and all the symptoms are affecting me overall. You have been so helpful, thank you very much!
I eat meat, and try keep as healthy of a lifestyle as possible. I do eat gluten and dairy but I'm cutting down ion gluten and aim to eliminate it all together.I'm wary of soy milk, as I know soya doesn't mix with hypothyroidism.
Main goal is gluten. But I eat lots of dairy (eggs, cheese, milk).
I've been wary of too much cruciferous food - and that they must be well cooked.
Who said it has to be in moderation? And why? And what is 'moderation' anyway. Most things you read about cruciferous veggies (goitrogens) is rubbish. People probably eat a whole host of goitrogens without even realising they are goitrogens. So, unless you have a violent reaction to something, just eat what you want.
I've been wary of too much cruciferous food - and that they must be well cooked.
That's rubbish - another hypo myth. cruciferous veggies are not likely to have any effect on your for several reasons - the main one being that you would have eat an inhuman amount of them for them to have any effect. But, they won't, anyway, because you're taking thyroid hormone replacment. Just eat raw Brussels sprouts if you fancy them, well-cooked they're disgusting! 🤣🤣🤣
Sounds like you have autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies
Have you had thyroid antibodies tested at any point since diagnosis
Has GP tested vitamin levels?
Levothyroxine is extremely fussy medication and MUST be taken on its own
You could try taking levothyroxine at bedtime
Often more convenient, may be more effective
Do you always get same brand levothyroxine at each
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high 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 on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in the U.K.?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Omgg 😭😭😭😭 I was previously treated for bipolar disorder because the doctors hadn't checked my thyroid. I was put on HIGH levels of lamotrigine which nearly killed me (I lost control of my executive functioning, and nearly committed suicide because of the misdiagnosis)!!Once I was taken off the mood stabilizer, my health bounced back almost immediately. Except the thyroid obviously.
I want to cry from relief because this validates my experience 😭😭😭 it's been 3 years of hell, and I've been led to believe that this is psychological /psychiatric.
Thank you for this, this is changing my whole life!!
I'm waiting for them to email me the results. I have been booked in for more blood tests on 20th June, even though they're aware my levels are low. No one has called to increase my dose.
Should I go private asap? What about an endocrinologist?
Thank you! This is overwhelming, as soo much to look at. But I've learnt so much today. Thank you. Am going to record all of this, document it and write out a list for doctors so test on Monday week after next.
Your over-range TSH shows that you need a higher dose of Levo.
The troponin level is used to test for heart attack or ongoing heart damage. Presumably this was done because you mentioned chest pain but yours is fine.
The WBC Differential would have been done to look for signs of infection, but your results are all in range suggesting that you don't have an infection.
The Total white cell count would be high if you had an infection but it's fine.
There are only two results on these two photos, that have anything to do with thyroid. TSH and cholesterol.
Your TSH - they say - is 'slightly' elevated. It's not just slight, it's much too high for someone on thyroid hormone replacement. The TSH of someone with no thyroid problems (euthyroid) is around 1 - that range is a travasty! But hypos, on thyroid hormone replacement, usually need it lower than that. Just getting the TSH somewhere within range - never mind where - is not the name of the game. Although most doctors think it is.
So, you really do need that increase in dose.
High cholesterol - yours is slightly above range - is usually linked to low FT3 (which they haven't tested!), so the high cholesterol suggests low T3 - which is what one would expect with that high TSH.
They can get away with just testing TSH at the moment. But, once it gets below 1, it's a very poor indicator of thyroid status, so you need to insist on FT4 and FT3 (thyroid hormones) being tested as well. Never allow your dose to be reduced just on the basis of a low TSH, always insist on the others being tested first.
No. Cholesterol has nothing to do with anything, apart from being an indictor of hypothyroidism. It's a symptom, not a disease, and it won't do you any harm. It certainly isn't causing your chest pains! So, forget the cholesterol, and refuse all pressure to put you on statins! The cholesterol will drop as the T3 rises.
They might do them, but I wouldn't hold your breath, if I were you. They are so ignorant they do not see the necessity of doing them. Probably wouldn't understand the results if they did do them! All they understand is the TSH. Sigh.
You can only know if you have Hashi's by testing antibodies, and/or having an ultrasound of your thyroid. None of those tests have anything to do with Hashi's.
Grrrr! Okay. I think it might be time to take matters into private hands and / or see a specialist. I can't go on like this. Every day is a chore.
I've really learnt a lot, and feel like I need to build a manual for myself 😂 this is so complex! And I appreciate the hard work and struggles you've been through, and helping me 😊🙏
Yes, it is time to take matters into your own hands, but don't be fooled into thinking that just because a doctor charges you the earth he must know what he's talking about. Most private doctors also work on the NSH, and only have a basic NHS training.
What you should do is know your doctor before making an appointment with them. To do that, I would suggest that you email TUK:
tukadmin@thyroiduk.org
and ask for the list of recommended doctors. But, you should know that these doctors are not recommended by TUK itself, but by its members, so it doesn't necessarily mean that you'll get the answers you want from them.
When you have chosen the one that interests you - due to location, or whatever - post on here for feed-back from people that have seen him/her. We're not allowed to discuss individual doctors on the open forum, but anyone who knows anything about the doctor in question can PM you with that information.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Appointment for GP discussion and additional blood work is for 20 June.
31 year old female, 5ft4, approximately 65kg. I was about 57kg in October last year and gained this much since. Probably why my cholesterol shot up too.
Also, I had that stupid bloody implant put in, and I wonder if the change in hormones aided in the weight gain.
yes..... as suspected , your TSH is over range. so (assuming you are already taking levo correctly , and away form other stuff so absorption is not affected) , then your dose needs increasing by 25mcg. Your cholesterol is high ,, but that is to be expected when undertreated ,( high cholesterol is a sign of under/ untreated hypothyroidism ) so cholesterol should come down by itself once hypothyroidism is treated. (don't let them give you statins for it without seeing if it improves once thyroid treatment is stabilised at correct dose first )
Haemoglobin is bottom of range - not a good result but doctors would say you aren't anaemic. Anaemia is diagnosed with under-range haemoglobin.
The Packed Cell Voume is another name for the Hamatocrit test. Below range suggests anaemia.
MCV is high in range. This suggests that your Vitamin B12 and/or folate is low. It is not just low iron that can cause anaemia. Low B12 and low folate can too.
MCHC - I don't really know anything about this.
Red Blood Cell Distribution Width - when a range is given the top is usually roughly 14. Yours looks to be high in range. This is telling you that you have a wide variety of sizes and ages of red blood cells. Healthier people would have less variety.
Platelet count - involved with clotting - yours is fine.
Cholesterol - Don't worry about this. Don't agree to take statins.
I am currently sat in A&E for the second time in 10 days with short, sharp chest pains and palpitations just like the OP has .Last time they said it was a gastro problem (I'm on aspirin and clopidogrel among others), as I had a heart attack and stent fitted December last year. PPI's to reduce acid cause me problems and I get a lot of wind .
Today I spoke to my GP who promptly said go back to A &E if you're still having chest pain and palpitations. I also asked him to check my thyroid as I moved house last September and it hasn't been checked for over 18 months. (In A&E last week my TSH was checked at 5pm so not fasting and from memory it was about .85 (definitely under 1) so they didn't check T3 or T4. I've had radio iodine treatment 11 years ago, on 75 for 2 days, then 100 on day 3. He is arranging for a blood test and I asked him to arrange T3/4, he will do that but won't do ferritin etc. I asked if my chest pain was thyroid and he more or less dismissed it out of hand . He said if TSH is ok then my T4/5 will be too!! Looks like I'll have to do a private test to ease my mind, how many little blood bottles will I have to fill please?! I struggled with my first go on a cholesterol test with just one bottle, despite doing everything that was mentioned on here. I am trying again with that one.
Sorry for the long post. I've been on thyroxine over 11 years and it has been ok. I take Mercury pharma or Actavis.
You'll get better answers from people if you start your own thread/question. Tagging a question on to the end of someone else's thread not only can get very confusing for both you and the OP, but won't be seen by very many people. I, for one, cannot answer your question about private testing, because I've never done it. So, copy and paste the relevant bits into a new post, and give an appropriate title, and I'm sure you'll get lots of helpful replies.
Wow that you so much for this. I have created one LONG doccie with this AMAZING feedback. It is a lot to take in, but this is going to be a life-long thing, so best I wrap my head around it now. You have been so helpful, thank you very much. I feel armed and ready to tackle this with more knowledge. This forum is incredible and posters are so helpful <3
A HUGE thank you to all posters here for your contributions, your knowledge and support. I no longer feel as alone or as scared as I was before. Knowledge is power and I have taken all the feedback here seriously, and will be using it to my advantage when speaking with doctors or specialists. While overwhelmed, I feel a sense of relief knowing that what I am feeling and experiencing is real and that I am not alone. Everyone has been so incredibly helpful!
I will no doubt be back in a couple weeks with further updates, post blood-tests round 2 and consultation. In the meantime, I'll slowly change my medication routine (separating antidepressants from levy) and see how I get on.
Thank you all SO much - this means the world to me
This means the world to me. I've been such a wreck this afternoon, trying to process this. My partner doesn't seem to understand, is trying to be positive "we will get you feeling better" but I don't think people understand that this is a fairly long, and complex process. I'm so incredibly tired. But thank you! I've have a 5 page document with all the feedback - this is going on page one!! And have saved all links shared with me. I'm eternally grateful, this is really difficult to do on your own.
This is a complex disease, the interconnection between gut and thyroid way beyond most GP’s knowledge…land most endocrinologists (vast majority are diabetes specialists)
Depression is common hypothyroid symptom and should improve as vitamins and thyroid levels improve
Many of us only recovered our health with the shared knowledge and experience on here
I am eternally grateful to all the help I have received from everyone on here over the years
…..and the research, knowledge and links everyone freely shares
This forum saved my life too in a slightly different way. So much knowledge, support and common sense - that just doesn't come from the medical profession. sad to say, but it's true.
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.
Same applies to low B12 - extremely common in hypothyroid patients
All patients who are hypothyroid should have B12 tested
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.
Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.
Stop taking the Escitalopram at the same time as your thyroid medication and wait until 3 hours later ….. in my personal experience antidepressants interact with thyroid meds and levels.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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