Bit of background info about me, I'm 29, female, steady slim weight and was diagnosed with an underactive thyroid back in about 2009 when I was 19 (apparently the worst readings the doctor had ever seen, despite 3 'normal' tests prior to this. Luckily my mum had also been diagnosed and knew exactly what was wrong with me and persuaded me to have one last test.)
Before I was diagnosed, I could fall asleep on a duck's top lip, was constantly freezing and had zero energy - I was extremely fatigued. Since being diagnosed, I have been on 75mg but not felt it was enough and have been on 100mg but felt it was too much. I have never really felt like I've had my medication under control, and have never felt energised.
I last had a blood test in November 2018 and my levels were TSH: 0.35 and T4: 16.8. At this point I had been taking 75mg for one day, 75mg for a second day and 100mg levthyroxine for a third day (on a 3 day cycle). I was still exhausted.
(As a side note, previously when I have been on 100mg daily, I had extreme over-medication symptoms, dizzyness and flu-like symptoms.)
February 2019: I was still feeling exhausted and could nap anywhere and often felt tearful (also constipation was an issue..). I upped my dosage to 75mg and 100mg alternating daily.
I am still on this dosage (75 and 100 alternating daily). I currently feel exhausted and have really dry and gritty eyes. Last week I was feeling dizzy and 'spaced out.' I'm waking up tired and wonder if i'm not actually sleeping well which could be making me more tired? Which is making me wonder if I'm overmedicated. I had a blood test last night and will post my results when I get these back.
I'm wondering, does anyone else struggle to know if they are over or undermedicated? The symptoms seem so similar, and my major symptom is exhaustion! Does anyone else also find that tiny variations send them over/under?
Looking for advice, although I appreciate I may not be able to get this until I receive my latest blood tests through this week.
Many thanks,
Kate
Written by
setay_k
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I would say it's essential to have a full thyroid/vitamin panel. You probably wont be able to get everything doe with your GP so if you can budget for a private test I would certainly do that.
You need:
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
We have private recommended labs who can do these tests as follows:
Medichecks Thyroid Check ULTRAVIT (on special offer at the moment for £79 so a very good buy)
medichecks.com/thyroid-func... If the offer expires you can use code THYROIDUK for a 10% discount on any test not on special offer
or
Blue Horizon Thyroid Check PLUS ELEVEN (says at the top of the page 33% off with BLUE33 code)
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
When doing thyroid tests, we advise:
* 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. 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.
* Fast overnight - 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. Eating 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 (both Medichecks and Blue Horizon advise to leave Biotin/B Complex off).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Post results with their reference ranges when you have them and we can help.
I don't mind paying for a private test - however normally at the hospital they take a vial of blood. Would I need to do this myself at home?
You can choose either fingerprick test which you can do at home, this video shows how to do it (although that kit is a little out of date, it looks a little different now):
Or you can arrange phlebotomy either with Medichecks (options on website) or see if your GP surgery or hospital do it (some will, some wont).
If you decide on a fingerprick test these tips may help:
* Be well hydrated, drink plenty of water the day before, and before you do the test.
* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.
* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.
* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.
* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.
* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable
I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did
* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.
Symptoms of over and under medication can be similar and vary in people so only blood tests will verify. You need to follow Seasidesusie 's advice and get everything tested.
As your Mum has hypothyroidism it's more than likely you both have autoimmune thyroid disease (Hashimoto's)
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor conversion of FT4 to FT3 can result in high Ft4 (causing hyper type symptoms) but low FT3 - meaning you remain hypothyroid
Important for vitamin levels to be optimal. Majority of Hashimoto's patients need to regularly retest vitamin levels and many need to supplement continuously to maintain optimal vitamin levels
Food intolerances are common
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thanks for your comments. Spent most of my weekend sleeping - I don't think this weather helps energy levels!
I had my GP results back:
TSH1.21 mU/L(0.35-5.5)
T415.7 pmol/L(10.5-21.0)
Which on the surface seem ok, however doesn't show my T3 levels.
I was due to take my full Medichecks test tomorrow, but I will need to now wait 7 days, as I have realised that the protein shake i have every day has Biotin in it!
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