where to start? 18 months ago asked for blood tests due to awful fatigue, joint pain, brain fog, also bmi of 32 even though eat as healthy as possible, exercise by walking as much. After long delays getting tested eventually diagnosed with iron overload having both genes & ferritin of 640, treatment was through blood letting a pint at a time took me just over a year to get down to maintenance of 62 ug/l, ideally between 30-50.
Still feeling totally exhausted, depressed,weight not shifting , joint pains. Returned to gp asked about thyroid as for as long as I can remember they’ve always said you’re borderline, I requested repeat due to healthy eating and why? Age menopause, was also offered orlisat and maybe a referral to weight management, I politely refused accepted the orlisat. Dr could see I wasn’t happy so ordered a repeat thyroid test hoping to prove was all in my mind then I got a call to say hashimoto is confirmed via
se thyroid peroxidase ab test 173kiu/L range less than 34,
Other thyroid blood testshave been TSH 5.6 (0.27-4.2)
T4 12.5 (12.0-22.0) these are the borderline results I was getting for years, only now with the peroxidase result do I get a diagnosis. Gp said so you’re keen to try levothyroxine? Yes please anything to help this brain fog and undeniable fatigue not been myself for years. Prescribed 25mg alternate days (feel to small dose) at least it’s a start, gp being cautious because of age just reached 65 two days after results came through.
I have the 6 week blood test tomorrow first thing alongside ferritin blood test. When results come through should I expect an increase in dose or a battle?
Sorry so longwinded I hope I make some sense been wanting to ask advice but fatigue gets the better of me some days worse than others. Have learnt a lot just reading some posts, I had the same struggles getting to bottom of the iron overload also known as haemochromatosis. Also I have cholesterol of 5.5 have been badgered with statins constantly trying different ones but they cause so much added joint pain, I have avoided, I’m hoping I may not need them as reading could also be a link.
Thank you in advance anyone who can understand my ramblings and any advise gratefully received,
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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
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
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.
Levothyroxine doesn’t top up your own thyroid output
Taking levothyroxine will lower TSH the message from pituitary asking thyroid to make thyroid hormones…..so it’s important to increase dose as fast as tolerated
Improving low vitamin levels will also help significantly
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
thank you so much for your invaluable knowledge, the blood tests tomorrow I’ve made sure is the earliest time 9am that they do and I took my last levothyroxine 48 hours prior after reading information on this site. I did think the dose was really low but hopefully will be increased after blood test results, ferritin will also be tested and I hope to try and keep levels now around 70-90, think dipping to 30 would be too low for me. I avoid vitamin c due to iron loading but always aim to keep well balanced diet lots berries & vegetables, chicken,eggs. I’ve become quite the haemochromatosis expert but this new diagnosis has thrown me, the connection is very interesting and the statin situation, I am so glad i have avoided them. I only take vitamin D, but will look into my other vitamin levels too as the tiredness is unreal. The thyroid test is down as TFT3 (T4 dose 25mcg every other day). If I could post the results when I get them for any advice before speaking with gp would be a great help.
Hi I am so sorry you are going through all this and completely understand the impossibility some days of posting coherence.
Been there ! It's horrible.
I have Hashimotos, Pernicious Anaemia, OA etc and for twenty years my lovely old GP listened to my symptoms and didn't rely solely on the numbers meaning when I felt better with extremely low TSH 0.02 he said ok, let's go with that.
Said doctor retired and every other GP in the practice refuses to listen and keep lowering my levo to bring my TSH into range... Making me ill.
I am 73 now and primary carer for my 78 yr hubby who's recently had a stroke and needs much help.
I am so hoping you have a more understanding GP and get the level that helps you feel well.
Thank you for letting me know your story as sometimes you feel you’re the only one. Sorry to hear about your struggles. I disregarded my symptoms for a long time being distracted looking after mum who unfortunately passed 2020 after contracting covid in hospital for a simple assessment over a fall. I also lost my little sister in 2018 age 52, it kind of set me back from being assertive in regards to my own health, husband also struggles day to day healthwise but manages to work part time for now. So I decided I didn’t want to feel so miserable as the symptoms worsened and wanted to live the best healthy life possible, so here I am on the journey. I realise GPs are so stretched but won’t be put off anymore. At least I know now it wasn’t all in my head.
Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency. However:
Ferritin levels are difficult to interpret if infection or inflammation is present, as levels can be high even in the presence of iron deficiency.
Telling you to get your ferritin down to 30 - 50 means taking it down to the minimum level which isn't deficiency. A level less than 30 is defined as deficiency.
Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
I would think that you have been told to reduce your ferritin (iron stores) too far. (Please note I'm not a doctor - I'm just someone who has struggled to keep my iron levels up most of my life.) And too low a level of iron has always knocked the stuffing out of me. You could ask your GP to give you an iron panel. Assuming he/she agrees, ask for the results and reference ranges once the test has been done then post them on here in a new thread. You could also ask for a Full Blood Count to be done. This would tell you if you were now anaemic, and/or if your red blood cells were in short supply and/or if they were too small.
If your GP refuses to give you an iron panel and a Full Blood Count it is possible to get them done privately (if you can afford them - I couldn't afford both). If your GP will only do one of these tests ask for the iron panel rather than the Full Blood Count.
I was diagnosed quite randomly after blood test was showing high ferritin levels and Tsat loading of 48%. haemochromatosis having two C82y genes it’s inherited diwn the line my brother has just been told he also has it and my son has the milder c82y H63d. After all the donations and not knowing I had hashimoto as well has probably left me a bit too low now. When I get my recent blood results in the next few days I’ll have a better picture and believe should now be best 70-90 ish ferritin. No wonder I’ve been feeling so rubbish. I hope to start feeling more myself once meds are sorted, this site is such a help as I wouldn’t have a clue otherwise.
Thanks so much for the link, I’m got quite a bit of reading to do, I enjoy gaining knowledge and understanding of the condition, makes me feel more in control.
Dr. Jin Sung via Youtube has a video of using Berberine to lower cholesterol and also be a substitute for Metformin (Type 2 Diabetis). Check it out. I had issues with Atorvastatin and now I'm on Repatha, and injectible cholesterol med because my HDL and LDL levels have gone through the roof and since using Repatha my levels are now in normal range. I have a bottle of Pure Encapsulations Berberine in my cabinet and I think that I will add that to my daily regimen. I'll check with my GP first. I do hope that you get everything worked out. It takes time, patience and a doctor who will listen. Best of luck to you.
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Extreme tiredness 
Help with iron results 
How to take Levo before a blood test when I split my dose, and feritin level
Further Advise please on low iron symptoms 
New to all this! TSH 22!!
