Good afternoon
i have attached a copy of all of my most recent bloods that I can find. I have added those I believe that I need tested to the bottom of the list. Could someone please let me know if I am on the right track. I have to make a gp appointment for this week to discuss further bloods. Gp is happy that I don’t need anything further at the moment. I don’t want to be a pest if she is right.
As always, I appreciate you taking the time to read my post and I hope you are well.
So they have just tested TSH the last 2 times?
Did you increase your dose since the previous TSH test?
I would recommend getting private tests done to show FT4 & FT3. We need to see these along with TSH taken at the same time to assess if you are converting well and if an increased dose might be appropriate.
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/help-and-supp...
There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. Check to see if there is a blood test companies near you. onedaytests.com/products/ul...
How did you get on with the doctor appointment at the weekend?
You really need to get further tests for pernicious anaemia. You will need to be a pes about this as the reference range for B12 is too wide and your result far too low.
Your folate is too low also.
See previous post & reply ref other vitamin levels. healthunlocked.com/thyroidu...
Hi Jaydee
Thank you for your reply. Yes despite me asking for the other tests they have only done TSH. I haven't changed my dose but TSH did change in that short period of time.
I am going to try and insist on getting the other tests done at this next appointment along with coeliac, Intrinsic Factor, pernicious anaemia, iron, magnesium, vitamin D, ferritin and antibodies. I haven't started with any other vitamins until I can see what's going on. I have stopped multivitamins and now am only taking vitamin D and fish oils.
Thats a great start with the vit D & fish oil.
Gather your confidence and courage to tackle your GP.
Weren't you previously prescribed B12 injections? Why were they stopped?
Thank you Jaydee. This forum is helping me to build my confidence and knowledge greatly. I appreciate the time that it takes to reply to so many posts and am extremely grateful.
I was getting B12 injections around July 2020. I think I had about 6 “top up” shots. They then said that I was fine and didn’t need them anymore. They made a massive difference at the time.
Once you have started B122 injections tests become irrelevant. GPs often get this wrong.
Perhaps pop over to the pernicious anaemia group here on Health Unlocked and ask a few questions about treatment, tests etc there.
oh thank you Jaydee. I Will definitely have a look at the other group too.
Request that TSH, Ft4 and Ft3 are tested together
Point out last time Ft4 and Ft3 were tested was 2021
FT4: 15.2 pmol/l (Range 10 - 22)
Ft4 was only 43.33% through range
FT3: 4.4 pmol/l (Range 3.1 - 6.8)
Ft3 was only 35.14% through range
Most people when adequately treated will have Ft4 at least 70% through range
Hi SlowDragon
Thank you for your response.
May I ask what the percentages are and their relevance please. I really am trying to learn as much as possible and would like to feel like I know what I’m talking about at the appointment.
ALWAYS test thyroid early morning for highest TSH
Last dose levothyroxine 24 hours before test for lowest Ft4
Levothyroxine is Ft4 and is storage hormone
For good conversion of Ft4 to Ft3 (active hormone) we must have GOOD vitamin levels
Most important result is always Ft3
When adequately treated this will be at least 50-60% through range minimum
Often conversion is not very good on just levothyroxine so Ft4 needs to be higher at 70-80% through range minimum
Levothyroxine doesn’t top up failing thyroid it replaces it
Think of it as petrol in the car…..tank needs to be full to last all day
Guidelines on likely dose by weight is Approx 1.6mcg levothyroxine per kilo of your weight per day
some people need higher dose, a few need lower dose
Approx how much do you weigh in kilo
Thank you. That makes a lot of sense. I am classed as obese at the moment and my weight has change over the past few years. I’m currently 107. Was nearer to 94 when diagnosed and put on 100.
Thank you
Then almost certainly under medicated
94 kilo x 1.6mcg = 150mcg as likely daily dose
Request they either test TSH, Ft4 and Ft3 together or increase dose levothyroxine now by 25mcg and retest 6-8 weeks after increasing dose
Which brand is 100mcg levothyroxine
Do you always get same brand
it’s so frustrating that she just saw TSH and sent me a message to say definitely will not be increasing Levo.
I take Accord which I think you said only comes in 50s but I can half them.
I dread the effort of going to the drs for what seems to be a regular waste of time. I hope she listens.
Thank you again. This is great.
Low vitamin levels tend to lower TSH because conversion of Ft4 to Ft3 is impaired……resulting in higher Ft4 and lower Ft3
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
NHS England Liothyronine guidelines July 2019
sps.nhs.uk/wp-content/uploa...
Page 9
Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron
See page 13
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
LEVO DOSE SHOULD NOT BE DETERMINED BY TSH
Diogenes/Toft paper:
bmcendocrdisord.biomedcentr...
healthunlocked.com/thyroidu...
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
LlINK TO PAPER:
ncbi.nlm.nih.gov/pubmed/320...
sciencedirect.com/science/a...
Thousands of U.K. thyroid patients forced to test privately to make progress. Rare to get Ft3 tested even if GP requests it …..but try
Dr has been no help whatsoever and actually advised against further testing. She said that it could change the outcome/treatments for the worst. She said I need to listen and believe that having the TSH test is all I need. Actually made me feel like I was being told off.
So onto plan B. Time to tackle this myself. Is this just the way it goes now? I am truly disgusted at my experience.
Unfortunately far from unusual….hence over 130,000 members on here
Next step….get FULL thyroid and vitamin testing done yourself
all thyroid blood tests early morning, ideally just before 9am 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Come back with new post once you get results
Thank you SlowDragon. I am even more determined to get to the bottom of this now. I will get the blood test booked and hopefully be back with results soon.
Tips on how to do DIY finger prick test
healthunlocked.com/thyroidu...
Or Medichecks and BH offer private blood draw for extra fee
Medichecks
medichecks.com/pages/clinic...
BH
Well my Dr has implied that I am a hypochondriac and refused to do any more tests. I am upset and annoyed. She said she was "worried about my questioning of medical information." Looks like I am going it alone. What a huge disappointment. I feel awful
You'll find your experience to be a common one on this forum.
The doctors' current testing protocol (TSH only) can't even diagnose central hypothyroidism (CH) any more. CH is a condition in which the patient can't produce enough TSH for their needs as a result of damage to their pituitary or their hypothalamus.
I'd like to ask doctors :
"Suppose a patient has a TSH of 1.5, how much Free T4 and Free T3 do you think the patient is likely to have?
Then ask the same question with different levels of TSH.
I doubt any of them would get very close to reality with many patients.
Coeliac test
personaldiagnostics.co.uk/c...
Perhaps wait for antibodies results before getting coeliac blood test
No point testing magnesium specifically. It’s an unreliable test. When supplementing vitamin D, it’s recommended to supplement magnesium
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
How do you have such amazing knowledge of all this? I am incredibly grateful for you sharing this information. Thank you
I only recovered my health with help and knowledge on this forum
More information on my profile
I have just read your profile and now understand your knowledge from lots of experience. Thank you for being there. It feels lonely on this journey somerimes
No point running MMA test …very expensive
As B12 low …..start supplementing
If levels improve then PA is unlikely
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week or two
Don’t start vitamin B complex before test …..see note below re testing
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Vitamin B complex
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow folate 400mcg) and continue separate B12
I have ordered the b12 drops and will do the £29 thyroid test. Is there a better time to take the drops? Do they take long to work?
B vitamins best after breakfast in morning
B12 drops absorbed in mouth so should avoid any gut absorption issues
Should see levels rise pretty rapidly. Symptoms might take longer to resolve
Once you have done blood test you can start vitamin B complex
Come back with new post once you get results
Hi SlowDragon. Sorry to bother you but you have come to be my source of information regarding all things thyroid. I have extremely shaky hands at the moment. It has been mentioned by others and I almost dropped two cups of coffee a couple of days ago. Is this all related or should I go back to gp? I’m doing everything I can to avoid them as much as possible just now. I have been taking b-2 drops for two days now and am just waiting on blood test kit arriving from Randox Health
Thank you.
Yes
When not on high enough dose levothyroxine and inadequate levels of thyroid hormones, adrenal glands try to compensate by increasing cortisol
Feeling Wired and anxiety and shaky common symptoms
Remember to test early morning, only drink water between waking and doing test, last dose levothyroxine 24 hours before test
thank you so much. It is making me rather anxious. Hopefully b12 will kick in soon and test will be quick. I can feel trembling right through my body tbh. Isn’t it crazy that dr can just send people away when feeling like this because bloods are “ok”. As always I greatly appreciate your time and help.
More and more and more bloods 
Latest bloods please advise
Help with bloods please
Bloods ? 
