Hi everyone, I had a rough patch with my endo back in Feb 2018 when he refused to accept my symptoms are thyroid related - constipation, puffy eyes, cold intolerance, lack of energy, weight gain, dry skin, heavy periods, tiredness, muscle weakness - when I had a TSH above range and FT4 and FT3 levels at the bottom.
I was diagnosed hypothyroid in 2013 and he said I was thyrotoxic in Nov 2017 with a TSH below range and FT4 over range and raging hypothyroid symptoms. When my thyroid levels showed underactivity in Jan 2018 he said he did not understand how this could happen and in my letter he wrote my symptoms were likely not hypothyroid related.
I responded to this letter by leaving him a voicemail message saying "how can you say my symptoms are not thyroid related with a TSH over range and my free hormones in the bottom of their ranges?" I left the conversation at that but 3 days later he called me back and left me a voicemail message. To this day I have not listened to this message because I am afraid of what he has said. To further prove a point I stopped my levothyroxine just to prove him wrong about my symptoms.
I do feel more able to talk to him to try and get this sorted but is it probably best to see a different endo altogether? I am in two minds about what to do! Please help!
Thanks in advance.
Nov 2017
TSH 0.02 (0.2 - 4.2)
FT4 25.6 (12 - 22)
FT3 4.2 (3.1 - 6.8)
Thyroglobulin antibody 504.3 (<115)
Thyroid peroxidase antibody 375 (<34)
Jan 2018
TSH 4.7 (0.2 - 4.2)
FT4 14.6 (12 - 22)
FT3 3.2 (3.1 - 6.8)
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Pink1123
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One NHS endo is very likely to be the same as another NHS endo, most are diabetes specialists and know very little about the thyroid. Thyroid specialists are like hen's teeth - very rare!
It would help if you could post your results (with reference ranges) but from what you've said
thyrotoxic in Nov 2017 with a TSH below range and FT4 over range and raging hypothyroid symptoms
and
Feb 2018 when he refused to accept my symptoms are thyroid related - constipation, puffy eyes, cold intolerance, lack of energy, weight gain, dry skin, heavy periods, tiredness, muscle weakness - when I had a TSH above range and FT4 and FT3 levels at the bottom.
then it's possible you may have autoimmune thyroid disease aka Hashimoto's. Have you had thyroid antibodies tested - Thyroid Peroxidase Abs and Thyroglobulin Abs - and were they raised? If so then this statement
When my thyroid levels showed underactivity in Jan 2018 he said he did not understand how this could happen and in my letter he wrote my symptoms were likely not hypothyroid related.
is very typical because most doctors (GPs and Endos) don't understand Hashi's.
Ah, there you are then, you have Hashimoto's (doctors call it Autoimmune Thyroiditis) and your doctor hasn't got a clue!
Your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help. Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut/absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. You need vitamins and minerals tested:
Vit D
B12
Folate
Ferritin
All need to be optimal for thyroid hormone to work. But you may need to address any gut/absorption problems first.
**
Jan 2018
TSH 4.7 (0.2 - 4.2)
FT4 14.6 (12 - 22)
FT3 3.2 (3.1 - 6.8)
These latest results show that you were undermedicated at the time. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo.
When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.
The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.
Thanks is it ok to go back onto 50mcg levothyroxine? I have been sleeping a lot more, feeling more slow and cold, dark circles more prominent under eyes. I had new thyroid function test done today and I know I need Levothyroxine, just that endo upset me enough for me to do what I did! I sweat a lot too, isn't that hyper?
The gp understands why I did what I did and has been supportive since I told her
I think 50mcg would be fine, after all it's a starter dose for newly diagnosed patients. The sweating would be because with Hashi's you can have hypo and hyper-type symptoms.
Maybe you should take someone with you to future appointments. It's amazing how differently we are treated when there is a witness, they don't have to say anything (unless you want them to, if you feel the need for some support), just sitting there is enough.
He doesn't have to say anything, reassure him that his presence means that you have a better chance of being treated with a little more respect. But if any of your symptoms that you discuss are dismissed, he can chip in with how you are affected, how it affects your life in general, family life, social life, etc. Prepare for that, discuss and make notes to take with you.
I had 4 appointments over 6 months with my GP with symptoms of something that could be potentially serious, I was fobbed off with "I don't know what it is" and "Would you like some co-codamol" and "Go away and if it doesn't get better come back". I took my son with me the next time and I was offered an MRI scan, no real hesitation. One has to wonder why!!
Male doctor + female patient = little woman, pat on the head, there there, depression, anxiety, etc.
Male doctor + female patient + male advocate = treated like a human being (usually)
Was anything done about these results? Are you taking any supplements?
Did you know that your below range MCV and over range MCHC are indicative of iron deficiency anaemia? Has anyone told you that and is it being treated?
Your ferritin is too low, it needs to be over 70 for thyroid hormone to work (but your doctors wont know that).
You are folate deficient as your level is below range.
Your B12 is very low and you should probably be tested for B12 deficiency/Pernicious Anaemia. Many people with your level are found to need B12 injections.
Your Vit D is dire, it's just 0.2 above the level where you should be having loading doses.
So you've had a diagnosis of iron deficiency anaemia in the past? Was it treated? Were you under a haematologist? Were you supposed to be re-referred if ferritin went below 50 or MCV/MCHC went out of range?
The folate is below range, it needs treating. Ask your GP what ranges are for if they're going to be ignored.
Also, check for signs of B12 deficiency here b12deficiency.info/signs-an... and if you have any list them for your GP and you will need further testing. Don't start folic acid until further testing has been carried out and B12 supplementation started (injections or otherwise).
800iu D3 will never, ever raise your dire Vit D level. As I said, it if was 0.2 less you would be having loading doses so I would be discussing this with your GP and pushing for them - see NICE treatment summary for Vit D deficiency:
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. Go and see your GP and ask that he treats you according to the local guidelines or this summary and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
If your GP wont increase your dose of D3 then come back and I will suggest what you should take.
Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Yes I had a diagnosis of iron deficiency in 2014 but consistently below range ferritin and MCV since 2011. It took 2 years to raise ferritin on tablets so an infusion was given in 2015 (Dec) by haematology who recommend level to be 50 or more. I will go back to gp and request things that are needed.
OK, and additionally, to help raise ferritin and keep a decent level once it's up, if you are not vegetarian then start eating liver. If you don't like it as a meal then chop small/mince and put in casseroles, cottage pie, curry, spag bol, any meat dish, also have chicken liver pate and other iron rich foods apjcn.nhri.org.tw/server/in...
Nope not vegetarian! I might start buying liver in bulk and freezing it just to put in casseroles etc - provided I can't taste it (the only reason I don't ever eat liver)!
Maybe try some lamb's liver first, just buy a small amount. It's quite mild tasting. If you can get calve's liver I believe that is even milder and probably chicken liver is the mildest of all.
You must get vitamins optimal. Come back and let us know how you get on
Ask for coeliac blood test ideally before changing to strictly gluten free diet
It really is best if you can always take supportive friend or family member with you to any thyroid related appointments. They don't need to say anything, but just by being there as a witness and supporter, you will be taken more seriously and the consultant will have to be more considerate
Thanks unfortunately I get the impression things between my endo and I are beyond repair - he should never have said such things to me and make me feel like it's my fault my results go up and down all the time. I am in my 30s, slim and mostly shy and I have had friends from work saying he takes advantage of those facts.
It will take some time to persuade my husband to accompany me to further appointments - with a new consultant or otherwise
No, the endo doesn't have a clue at all. I told my husband how I was spoken to by the endo and he has said it was a disgusting way to speak to me. This 'consultant' shouted at me, said I had overdosed and that it wasn't 'very good' for me to have such results. My jaw dropped when he said all this. He then reduced my meds and wrote a mental disorder diagnosis on future letters. I can't believe he deems himself qualified to make a mental health diagnosis!
He then reduced my meds and wrote a mental disorder diagnosis on future letters. I can't believe he deems himself qualified to make a mental health diagnosis!
An endo is not qualified to do that. I would challenge that diagnosis and ask for it to be removed from your records. It's disgusting the way we Hypos are treated, disbelieved and made to feel like frauds.
The NHS has a cunning plan. They are going to give as many people as possible a mental health diagnosis. Once they've done that they will refuse to test or investigate existing conditions to save money - the patient is mad after all, so it would just be a waste of money. The conditions people could be diagnosed with are :
One thing (amongst many things) that shocks me is that doctors are being given training courses in how to sell this sh** and get patients to accept it all.
I've not done it so I don't know the appropriate way to go about it. I would put a new thread on the forum specifically asking this question (make it obvious in the title), I'm sure there will be someone who can help.
Sadly experienced a lot of what you are going through, and unfortunately as I did you are going to have to bite the bullet and see a private endo,sad but true,however this is your health and body you are talking about and I think at the end of the day it is worth the money to have someone on your side that actually listens to you.Good luck
Raincloud1, There is no guarantee that a private endo will be any better (in medical terms) than an NHS one, nor that they will be more polite. Plenty of people have come here and posted after a private appointment and said it was a waste of money.
If you got good treatment from going private I would suggest that you were just lucky.
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Help me – desperate for advice. Feel so uncared for by endo :( 
Thyroid levels advice please
I think I did something wrong with my 150/175mcg dose
Stopping levothyroxine
